Washington Post article on Toni Bernhard's latest Psychology Today column (Oct3/16)

[waiting]

Courtesy of the Toronto Star:


https://www.google.ca/amp/s/www.the...-chronic-pain-for-15-years.html?client=safari

 

[Old Bones]

I saw a similar (longer) article a couple of days ago, and generally liked it. However, I was a bit "put off" by one comment:

"She’s obviously not too tired to write: . . . "

The full Psychology Today column can be found at:

https://www.psychologytoday.com/blo...-t-change-if-my-health-were-restored-tomorrow

 

[waiting]

I saw a similar (longer) article a couple of days ago, and generally liked it. However, I was a bit "put off" by one comment:

"She’s obviously not too tired to write: . . . "

The full Psychology Today column can be found at:

https://www.psychologytoday.com/blo...-t-change-if-my-health-were-restored-tomorrow

Yes, I had the same impression but perhaps -- giving her the benefit of the doubt -- it was meant to be a supportive comment (the ever-present narrative of ill/disabled people who "push through" and "triumph against the odds").

Otherwise, it comes across as disparaging.

However, there is also seemingly no awareness of the severe PEM payback Toni undoubtedly endures after writing.

Thanks for posting the link to Toni's column.

 

[CFS_for_19_years]

From the Psychology Today article
What I Wouldn’t Change If My Health Were Restored Tomorrow

6. I’d maintain a healthy skepticism about doctors.
I used to be in awe of doctors. Now, although I appreciate their special skills, the fact is that I often know more about my various health issues than they do. As a result, I’ve learned to be skeptical about some of their statements and recommendations, and I don’t depend on them for all the answers. This relationship to the medical profession would remain a permanent fixture in my life.

 

[valentinelynx]

This quote from the article caught my eye,

"And she would never, never abandon her “pillow arrangement.” After years of spending too much time in bed, she has figured out exactly what pillow of what shape she needs to place where in her bed to get a comfortable night’s sleep. Indeed, it sounds like a useful thing to learn."

I, too, have a specific arrangement of specific pillows that allows me to sleep comfortably - supporting my limbs so they don't fall asleep or start to ache from fatigue from being in an unsupported position. I've had maids make odd comments about my odd pillow needs in hotels, because I take a pile of pillows whenever I travel so I can make my nest.

The most disease-specific thing about my sleep pillow needs, I think, is that I have to have my arms supported so no muscle tone is needed to keep them in position, or they start to ache. I can't sleep on my side, because my lower hip bone will hurt and my upper leg will start to ache from being unsupported. I need one pillow under each side my back to support my back muscles and arms, one under my knees to keep strain off of lumbar/sacral region, one under my feet, one under my upper back and at least 3 under my head. I no longer understand how normal people sleep with one pillow! I need a minimum of 8, preferably 9 or 10!

 

[Valentijn]

I've had maids make odd comments about my odd pillow needs in hotels, because I take a pile of pillows whenever I travel so I can make my nest.

I call it my nest as well. Very naughty fiance likes to flop on my nest and get scolded

I have to sleep on my left side, since oxygen saturation drops and heart rate rises in any other position (I can't even lean back a bit for long when sitting on a couch or chair). It can make for a sore hip overnight, but I've got a fairly soft mattress plus a thick mattress topper, and that helps a lot.