Dr. Bateman's Five Treatment Pearls

[Cort]

You can see it's not about a cure right now. It's about building a foundation for better health and achieving better health.....

• http://www.drcourtneycraig.com/blog/2015/5/6/spoonie-radio-ep-10-dr-lucinda-bateman

1. Building emotional resilience
2. Managing sleep
3. Controlling pain
4. Pacing
5. Treating comorbid condition

Dr. Bateman uses the Light studies to emphasize the need for pacing.

She has a nice bit on pacing and how not easy it is....

And then the next thing is to tell people that pacing is not the same thing as resting. It's a completely different thing. Pacing is learning how to stop short of inducing relapse, and it's a really delicate interplay with physical conditioning and probably the most important thing is that has to be individualized to the patient.
So I think that there's a lot of errors that get made; people don't do anything because the symptoms are horrible and they are afraid to induce them and some people are chronically inducing post-exertional malaise and living in very high symptom burden. So again it has to be individualized. And the goal is to be able to do as much as your symptoms permit without inducing post-exertional malaise.

It's not that people are doing too little - it's that they're generally doing too much....Boy isn't that true!

I think contrary to maybe some stereotyping that people with this illness are lazy or whatever--I think it is really the opposite; that sometimes people get in this place because they are determined to keep going and ignore the signals.

There's a lot more on Dr. Craig's blog

 

[Who Me?]

One of the first things I remember hearing is "do 50% of what you think you can."

 

[Cort]

One of the first things I remember hearing is "do 50% of what you think you can."

SO much easier said than done...

I think it's also good to break up work and do different things frequently.

 

[Who Me?]

When I have to go out I do it in stages. Brush my teeth, rest. Put on my pants, rest. Top, rest. I do this over the course of a few hours.

For other things 5 or so minutes is my max before I have to stop.

The problem I have, and others, is that we end up so deconditioned.
So on top of fatigue there is weakness.

 

[TigerLilea]

I tried pacing for the first four months after being diagnosed and I actually got worse. I don't pace. When I can, I do, and when I can't, I rest. My view is that life is too short and I'm not going to waste a minute of my available energy resting.

 

[ladybug64]

Can anyone give me some tips: I have learned to pace myself pretty well, but a big problem I experience is that family/friends judge me by how I look. I make a huge effort to "look normal" when I go out (no point in looking as bad as we feel, right?) so folks see me up and out one hour, then drastically tired and needing to lay down the next and they just don't understand how it can change so quickly--they tend to think I exaggerate or am not really so sick. I hear a lot of "well you look great" when I feel awful and if I try to explain, I get blank or disbelieving looks. Pointing out a person diagnosed with cancer doesn't necessarily look sick on the outside either, or explaining that I have chronic mono and most people with mono don't have the energy to leave the house doesn't help. How do you all handle this?

 

[TigerLilea]

After having CFS/ME for 24 years now, I don't worry about what other people think about me. I look healthy and I get the "you look so good" all of the time. I simply say I might look well, but I am totally exhausted. I leave it at that. If they don't want to believe that there is anything wrong with me that is their problem - not mine.

 

[Carole]

I tried pacing for the first four months after being diagnosed and I actually got worse. I don't pace. When I can, I do, and when I can't, I rest. My view is that life is too short and I'm not going to waste a minute of my available energy resting.

My pacing does not work the way that is everyone else does .

I try to find my triggers-(what sets me off the most). Too many appts in one day. (particularly Dr.)

Not enough sleep-have to make it up. Also HAVE TO REST SOME.

STRESS IS THE BIGGIE FOR ME.WHEN I KNOW SOMEONE STRESSES ME OUT-I AVOID THEM LIKE THE PLAGUE!!!

I DO MY YOGA RELIGIOUSLY. AM PM SOMETIMES IN THE MIDDLE OF THE NIGHT. IN BED!!!!!

IF I AM STANDING-I MOVE AROUND. I DO NOT STAND STILL. BEFORE ALL THIS IN 1987 I WAS AN ATHLETE.

PLANT BASED DIET. NO SUGAR OR GLUTEN.

Carole

Carole