Sunday, 8 February 2015

What do spoons, beans, gorillas, credit cards and envelopes have in common?

They are all ways of describing how M.E affects energy levels! It's a very difficult thing to get your head around (even for sufferers) and I have found these to be the best....


1. The Spoon Theory

This is the one you are most likely to have heard of.

 Link to The Spoon Theory

Summary: Christine Miserandino came up with the Spoon Theory one day whilst sitting at a cafe with her friend. It was a friend who understood the illness and had seen Christine unwell but couldn't quite put herself in her friend's place to imagine what it felt like to be so sick for so long. Christine grabbed some spoons to explain and 'The Spoon Theory' was born. 



Christine MiserandinoChrstine Miosaerandino cam
Christine Miserandino
Christine Miserandino
The Spoon Theory is based on the idea that everyone has a number of spoons (stay with me.... it does make sense.....) A healthy person has an unlimited number of spoons. A sick person has a very limited number of spoons. A spoon is used each time you carry out a task, so in the example they speak of getting ready for work... a spoon for getting out of bed, a spoon for showering, a spoon for getting dressed, a spoon for making breakfast etc. Before you know it you have run out of spoons and you haven't even left the house yet. 


Sometimes in a day I have only 5 spoons. If I use one each time I go to the bathroom (because I have to get out of bed, walk to the bathroom, wash my hands afterwards, get back into bed) then maybe that's all I'll be able to do that day. Some days I have enough spoons to have a shower. Other days I have enough spoons to draw or knit, or go out for an hour or so. It just depends on the day. Bad days = less spoons. 

You might see chronically ill people refer to themselves as 'spoonies', or hear someone offering to 'send spoons'. This is where the spoon references originated from. 

BUT IT'S NOT AS SIMPLE AS SPOONS, because in M.E there is a cumulative effect of overdoing things, or 'Post -Exertional Malaise' (PEM) which means that doing an activity not only uses up spoons, but has an ongoing impact on how many spoons you will have the following day and the day after that.  Which brings us nicely on to beans.




2. Beans 




From the Sweet Briar Sisters (click here for link)


There's not much more to say about this one, it describes life with M.E so well.... except that I love that they prioritise fun and that some things are worth the crash. 

But...... please don't decide for me, it's up to me to decide if it's worth the crash or not thank you very much!









3. The Gorilla in your House

The Gorilla in your House is a useful way of helping others to understand what it is like to 'acquire' a disability by comparing it to suddenly having a gorilla in your house (and the upheaval that this goes on to cause). This resonates strongly with me because in my journey with M.E I have become significantly disabled and have had to make adjustments to my life. The blog post talks of adjustments and acceptance of the gorilla rather than trying to force it to go away, very wise words. 

Read the blog post here 



4. Credit card

At a recent conference, Dr Van Ness described having the effect of exercise on patients with M.E and explained it in terms of oxygen deficit. His research showed that patients with M.E had a much higher oxygen deficit after exercise than healthy controls, and he described this in terms of borrowing on a credit card.

For example, an athlete borrows at a rate of 5%, meaning he has little interest or payback afterwards. A healthy person borrows at a rate of 10%, still fairly manageable to pay back. However a person with ME has a 50% rate of interest. So if all three did the same activity, the person with ME would be paying for it long after the others had cleared their debt.

Hopefully that makes a little bit of sense, please watch the video to hear someone who actually knows how to explain it!

Watch the video here 



5. The energy envelope

The final example I'll include here is that of the energy envelope. The energy envelope contains your available energy for the day. (You could say it carries all of your spoons!) If you plan carefully and pace you can live within this amount of energy, without pushing your body to do too much.This is called 'living within the energy envelope'. Living within the energy envelope helps to prevent crashes and get you out of the 'boom and bust' cycle.


The concept of the energy envelope helps me to understand and accept my limitations, and therefore work within them in order to gain some sense of control. If you consistently stay within your energy limits there is a chance that you may be able to gradually increase them.... exciting stuff. It's a way of introducing pacing into your life, and it is definitely worth introducing pacing into your life. Pacing, or living within my energy envelope has had the single most important effect on my symptoms.



 So..... the moral of this post? Use your spoons wisely, keep some in your envelope if you can, look after your beans and accept the gorilla in your house. Easy.
















 

6 comments:

  1. Replies
    1. Thank you Maria, sending you some spoons ;) xx

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  2. Great explanations!! I find coping with lupus and Fibromyalgia very much the same. Trouble is there are just never enough beans!! Take care. Sharon Xx

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    1. Thank you Sharon, sending beans :) xx

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  3. I've never heard of the bean explanation before, it's probably the one i like the best as well, so thanks!

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    1. Thank you Jessica, I'm glad it helped!

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