Tuesday, 12 May 2015

Well enough to drink coffee?

Often people find it hard to understand why ME folk can do something once but not repeatedly.  

I used to think that way too.

Before I was ill, I remember hearing a comment about a colleague who was off work on long-term sick leave:

Some-one said, "If he's well enough to be out drinking coffee, he should be back in work!"

I'm spared the memory of my reply because I was dashing out to teach a class at the time, but I remember thinking that he was obviously on the mend and would no doubt be back to work in a day or two.

I would think differently now, because I know that some illness recoveries are not quite that simple. Sometimes recovery stalls.

We are so used to thinking of some-one as either ill and in bed or recovered and at work, that we have difficulty understanding the long-term limbo of chronic illness.

This is where an analogy to a bank balance comes in handy.

We are all familiar with budgeting our finances and with the concept of "saving up" for something special.  The higher our income of course the more often we can indulge ourselves.

So lets imagine looking in at a posh restaurant. Can we tell who, amongst the diners, eat here often, and who has saved for months for their meal tonight?  Hopefully not - hopefully all diners are enjoying their dinner with equal delight!

So, just as observing a single monetary splash does not tell us everything about an individual's financial state, neither does observing a single moment in time tell us much about an ME patient's actual level of health.

Of course, for those with no flexibility there won't be this confusion - because quite simply these folk won't be eating out at all - every penny (or unit of energy) being taken up with simple survival!

Yet, for those of us with ME who are not fully "severe", we might sometimes be seen out and about, smiling, laughing and looking apparently "well".

At this point please remember, that it is not possible to tell from this exactly how "well" we are! That hour of freedom might have come on credit, and at a high interest rate.  It might therefore have consequences reaching forwards over the next days, weeks, or perhaps months.

Adrenalin, and "feel good" hormones are amazing at hiding the true impact at the time!

So, a day out can be bit like spending on a variable budget - with a credit option that doesn't tell you when you start dipping into it, and an interest rate that is only declared a couple of days after the big spend!

Doing something with this sort of arrangement, means that you can't risk repeating it too often, and certainly not on a day to day basis.

Yet, to get out once in a while, and do normal things is so very precious. For that reason, sometimes, we'll just do it anyway.

So if you see one of us having a coffee somewhere and looking well, it could be that we are on a recovery path... but more likely, we are just managing things in order to splash out for a moment!

And were one of us to suddenly really recover?

Well our friends wouldn't be long knowing it, because in the same way that money is easily spent, so health and well-being is hard to hold back.

I think I'd start with my garden....


This post was written for ME Awareness and #May12BlogBomb - 2015 Link List here

Further Information:

The Spoon Theory
-  is an idea that equates spoons to units of energy.

Pacing  - is a technique of attempting to stay within the energy constraints of our condition, and so avoiding the "high interest" consequences of over-doing things on a day out.  Below are links to some posts I've written on Pacing:
Do you STOP soon enough? March 2015
Pacing and Unpredictable Events Sept 2014
"Play-Up & Lay-Up" not "Boom & Bust" Sept 2014
The Exercise Catch 22! Jul 2014
ME Awareness - Why NOT Exercise? May 2014


  1. Thank you so much for this post. I have had ME for 10 years and never heard of our energy described in such an easy to relate to way. Thank you for spending your "money" on writing this piece x

    1. Thank you - it means a lot to me that people find what I write useful. xx

  2. new follower here!! fantastic blog x x

    1. Thank you for following.. and the lovely comment. xx

  3. Great post Sally!!! Sadly I would have thought the same thing, prior to ME/CFS about people being unwell or sick! At least I have learnt to be a bit more understanding now lol!

    Lennae xxx


    1. Cheers Lennae! Yes such a frustrating illness - even for us to understand, let alone those around us!!

  4. Brilliant post :-) Sending you lots of love and support xx


    1. Thank you Tasha... and for the link to your blog. Love your fresh air and good food approach. xx

  5. With the help of ProVigil I shlepped through a river rescue course this weekend. Mental and muscle strength def subpar on Day 2. So yeah I'll prob be out all week as in abed. Recharging.

  6. Another excellent piece explained so well Sally! xxx

  7. Right on, as usual. Thank you, Sally!

  8. Sally, you do have a gift for expressing difficult ME problems in an accessible way. I love this and am sharing it with friends.

    1. Ah thank you Gwen. :) I think I missed your comment earlier. xx

  9. I often use the example of a battery and having a faulty power cord that doesn't always charge the battery fully. These are things that people have seen in real life so they can sometimes relate.

    1. Yes - that works too. Electric cars with rechargeable batteries are also useful for explanations. It's good to have a variety of explanations in mind I think. :)

  10. Great article Sally. I have taken the liberty of reblogging it here: