* 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. :(

Tuesday, June 28, 2011

XMRV and my prostrate

The accuracy of the WPI’s test results concerning XMRV and Me/Cfs have been questioned all over the world by scientists and by social media users.  You can find information about it on twitter, facebook, blog rolls, and even ezines dedicated to it debating the cause of me/cfs and it's link to XMRV.  You could say it has gone viral.

It's a big issue, the science isn't simple and the emotional response from the me/cfs community has been intense.  XMRV has been a source of hope and pain for many me/cfs sufferers and has added a double loop to the roller coaster ride of having me/cfs.  

In my family it has also been the source of  a few laughs, if nothing else, it gave me the opportunity to have this conversation with Mum and Dad over dinner:

Me: I hope this XMRV thingy proves to be correct.

Mum: Wouldn’t it be great to have a ‘test’ for me/cfs!
Dad:  XM who? What’s this

Me: Well some recent research has found a type of retrovirus in people with me/cfs.

Dad: Retro who?

Me: Oh Retro means something to do with re writing the DNA/RNA, the aids virus is a type of retrovirus. Nothing to do with the 60's.

Dad: What, do you have aids?

Me:  No of course not!   

Dad: so what’s this virus, have you got it?

Mum: No she doesn't know, honey.  It's still very much in the research stages.  It’s possible that there may be a link between the virus and me/cfs. They have found it in people with Prostate cancer too.

Dad: Have you had your prostrate checked?

Me: umm Dad , I don’t have one of those.

Dad: oh . right of course not.

 Me: (coughing) would you like some horse radish?

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?