* I've changed the blog address from www.sarahsworld.me back to the original (badly chosen, but I'm stuck with it) address of www.kiwikchat.blogspot.com .

This means that some links to older posts and old links from other sites don't work. :(

Friday, June 24, 2011

Positive thinking and M.E.

After seeing yet another specialist who conceded that I appear to have that Chronic Fatigue thing and then recommended considering anti-depressants, cognitive behavioural therapy (CBT) and graded exercise, I decided to let out my frustration with this post.  Trying hard not to rant...

It is surprising but there are still some people out there still think that me/cfs can be cured by positive thinking or therapy.  Anyone who has had or knows someone with me/cfs knows that this absolutely crazy talk.

The weirdness of the symptoms speaks for themselves, they are so strange:

-  Sore stomach, throat, mouth, glands, joints and muscles. (sometimes only on one side of the body)
-  Morning hangover symptoms which last all day on bad days ie. hangover/ seasick nausea.
-  Toxic blood feeling, similar to a hangover when even your blood feels poisoned and every movement makes it worse.
-  Icy cold feet, despite layers and layers of warm socks and shoes.
-  Sensitivity to smells, yes your deodorant is making me ill.
-  Exhaustion, saving energy by not showering every day (hey I'm not going out anyway!).
-  Orthostatic Intolerance, difficulty standing for any length of time (very inconvenient). 
-  Brain fog, (If I could just remember who the main character was, this book would surely make sense).
-  Heavy limbs, imagine if someone dialled up the force of gravity x10.
-  Food sensitivities. Yes my favourite food is Thai food, but nothing spicy please oh and I'm on the Prince Alfred Hospital elimination diet.
-  Insomnia, even though I am too tired to have a shower, I can't fall asleep until 1am.
-  Irritability and depression, imagine how grumpy you would be if you had the flu for a year or more.
-  Post exertion malaise, the definitive symptom. (unlike someone with depression, I feel worse after not before an activity).
-  Moments of wellness, yes freaky days/hours or minutes when I feel well, no symptoms at all and then bamm just as I start to think about doing things, they all come back in no particular order.

 How could anyone imagine such a broad range of freaky symptoms?  If am constantly being surprised by the weirdness of my symptoms then how can I use 'positive thought' to keep them away? Is that what you tell people with diabetes, glandular fever or cancer?

When positive thinking and cognitive behavioural therapy is useful:

Okay so now that I've had my rant, I have to concede that there are times when positive thinking and CBT help me to cope with this crappy illness.  I use a combination of meditation and visualisation.  I focus on replacing negative limiting thoughts with positive realistic thoughts. 

I think of my meditations as "preventative maintenance" because when I get stressed or depressed my symptoms get worse and are harder to deal with.

Here's what I do (in case you are interested):
1. I tense and then relax all of my body parts, one by one, while concentrating on breathing then I lay still and start a visualisation.
2. I imagine walking through a forest (or relaxed setting of my choice sometimes it's a beach).
3. Then I reach a nice hut and go in and I find a book, which has negative thoughts about me written in it (no more than 3, I can't remember more at a time).
4.  I cross out these negative thoughts, rip out the page, and throw it into the fire (there is always a handy fireplace).
5. I write positive (yet realistic) thoughts in the book which directly counter the thoughts I have destroyed. eg 'I am boring and no fun, I can't do anything, no wonder I have few friends' is replaced with ' I am a fun and funny person, I am temporarily disabled and the friends I have are true and precious friends'.
6. I read this a few times then close the book leave the hut and head back down the path with a spring in my step.

The trick to making this work is to visualise each step you take as if you really were walking, how the ground feels under your feet, how your thighs lift your legs, how your hand feels as it writes each letter of each word and even how the writing feels on the page. 

This is my favourite meditation and afterwards I am more relaxed and if I am having a rough day it enables me to stop worrying about how sick I am and lets me view this as a temporary thing that will pass.  It's almost as good as the feeling I used to get after a brisk walk and it keeps me approximately sane.   (For more details on technique, see the book 'Beating Chronic Fatigue' by Dr Kristina Downing-Orr, Chapter nine, pg 131, I got it from the library.)

Despite my best intentions, sometimes on really bad days, nothing works, and I can only hide in bed and wait for the next okay day to come.  On those days I let myself off the hook and tell myself that it is okay to be upset, that I'm not sick because I am failing to think enough positive thoughts.  I'm sick because I have a weird illness which doesn't have a real name or known cause yet.

So next time a doctor advises me that I should try positive thinking or CBT, I will just tell them that I'm onto it already and try not to get wound up.

What works for you?
Do you have any meditation/cbt/visualisation techniques to share?


  1. When my fatigue is bad rest/sleep and lots of it is the only cure for me.
    Once the brain is starting to function again, music from my Ipod is my number one pick me up. Between tweeting and my music collection my Ipod touch is a great way to still feel in touch.
    With the right music (and my eyes closed) I can be out walking the hills with my camera and taking in the view.

  2. HI Andy, thanks so much for your comment.
    I agree rest is the only real thing that works when the fatigue is bad. It is frustrating isn't it, that despite all advances in science, all we can do is rest and pace ourselves to get better.
    I do find that mid visualisation, I want to stop to take photos of the view. I'm glad I'm not the only one taking imaginary photos. haha.
    Take care.