Doctor Poulson: We're Not Just Tired

"Fatigue is a devastating symptom that deserves the same attention as pain, nausea, ... and other well-recognized complications of a malignant illness. Oncologists must recognize its common presence and ask the right questions to elucidate its dimensions.^"

The late Dr. M. Jane Poulson, a physician from the Princess Margaret Hospital,
University of Toronto, wrote in 1998 about what many of us feel when we should be feeling better.

Or at least when we think we should be feeling better

" . . .For many months, I found myself quite content to simply sit doing nothing. I had neither the physical energy to move nor the mental energy to read or to contemplate.^"

Nobody tells us about the fatigue

Jane was only 46 years old when she had a visit with her surgeon 2 months after being treated  for inflammatory breast cancer. She told him that fatigue and lack of energy were overwhelming her.

"I am feeling as if I can hardly put one foot in front of the other at times." 

"I sure know how you feel," he said reassuringly. "I was on call last week and . . . I still haven’t caught up yet. "

The problem was, Jane was also a physician who had treated cancer patients for years. She knew about the routines, the hours, the fatigue of his life. 

She writes

"I wanted to shake my doctor by the collar of his lab coat and scream. 'You have no idea how I feel!' But I did not have the energy. I could not seem to find the words or language which would make the doctors, nurses, and other health care professionals understand just how tired I was."

Like in most cases, Jane's providers asked about pain and shortness of breath and looking back she remembered her own patients to whom she'd suggesting getting a little extra sleep. She reminded telling them that their bodies had recently been through a lot.

(Medical Professionals)"just didn’t get it" in spite of being told repeatedly that "the most overwhelming symptom for me was fatigue...  Despite the fact that the majority of my clinical practice was spent with oncology patients, I had not realized the enormity of the problem about which my patients complained"^.

Terminology

So what's wrong with this picture, as least what seems to make sense, is that the doctor hears "tired" or "fatigue" and mistakenly presumes they know what that means. But Jane writes

"The deadening fatigue which invades the very bones of cancer patients is totally unlike even the most profound fatigue of an otherwise well person, even a busy doctor."

"There is no "endorphin rush" with cancer fatigue. . . When healthy, I did not realize the energy required for activities of daily living, such as bathing, dressing, or sitting upright in a chair. ^"

Jane didn't have an answer that I've found

She died of Breast cancer in 2001, passing on to us the question of how exhausted cancer patients deal with our befuddlement with the fatigue and the symptoms that seem to take steps backwards.

And how do we convince friends and family and families that we're too exhausted to walk down the hall when our health care professionals don't have a clue?

• Does the fact that a tumor has lived off our adrenalin while lurking for years in our bodies have anything to do with this?
• Does the body's inflammatory response get out of whack when subjected to chemicals produced by the tumor?
• Do those reactions feed each other to make us dead tired, shuffling through life when we can stay awake and not in tears?

Call me crazy but all the healthy diet, regular sleeping habits, and creation of a restorative environment with fragrance, sound, and visual effects sound lovely, but idealized. Who's got the energy to hop over to my house and set up a lovely soothing household system like that for me? it sounds like what I really need is a mommy.

Read more about Jane Poulson via reprints of her articles: Not Just Tired -- Poulson 19  21 : 4180 -- Journal of Clinical Oncology.

Comments

[Mai-Liis]

You might hate me for saying this, but I believe that all illness has an emotional base. That does not mean that the ill person is to blame for her or his illness, of course.

If you have not already done so, please read Carolyn Myss "Why People Don't Heal". I'll grant you, it's a much easier read for those who are not sick. I'd also like to introduce you to PSYCH-K which cannot clear your cancer, but can reprogram limiting beliefs which make you so uncomfortable. (My best friend here has breast cancer, and she doesn't want to hear this. I secretly don't hold out much hope for her.)
Mai-Liis Peacock

[Susan Reynolds]

The real question Mai-Liis, is are Doctors (and insurers) offering us the support that we need so that we don't HAVE to simply use whatever energy we have in our reserves to survive the situation as we find it.

If we read much at all we discover that things like stress hormones explode tumor growth. So it's a short step to seeing the interconnectivity of mind and body.

Given that the body is one organism, and in cancer it's essentially killing itself, our health care system and community need to be providing a whole range of options that might help us optimize SELF, thus making possible better chances for healing.

Expecting any patient who is very ill and given a dismal prognosis to search for the right treatment or insight though is as unrealistic as expecting an Alzheimer's patient to find their way home in the dark.

And believe me - it's darned dark in here.

[Chaska (Mai-Liis)]

I just found your response, and humbly apologize.
Yes, it is so easy to spout off when on the outside looking in! It's bad enough to be feeling like shit, without hearing others spout off about what the sick person shouln't have done, or should be doing now. As far as the medical community goes, I gave up on their having a clue a long time ago.