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




36 comments:

  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

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

      Delete
  2. new follower here!! fantastic blog x x

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

      Delete
  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

    www.lennaesworld.com

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

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


    http://lovelifehealthandfood.blogspot.co.uk/

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

      Delete
  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.

    ReplyDelete
  6. Another excellent piece explained so well Sally! xxx

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

    ReplyDelete
  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.

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

      Delete
  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.

    ReplyDelete
    Replies
    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. :)

      Delete
  10. Great article Sally. I have taken the liberty of reblogging it here:
    http://www.flyinginthespirit.cuttys.net/2016/05/26/well-enough-to-drink-coffee/

    ReplyDelete
  11. Do You Need A Powerful Africa Native Doctor? I Mean A Spiritual Herbalist
    With Great Spirit Connected To Ancestors. Call or WhatsApp +2349058774809 Dr Obodubu Monday Is A High Voodoo Priest Master. He is a Spell Caster, Native
    Doctor, Spiritual Herbalist, Powerful Sickle cell Healer, Spiritual
    Astrologer, Psychic Reader, Multi Guru, Witch Doctor, Priest Of Africa
    Money Ritual.
    Have You Been To Native Doctor to Native Doctor Without Any Solution To
    Your Problems Or Rather Add To it? Have You Been To Place To Place In View
    Of A Powerful Native Doctor That Can Solve All Your Predicament, You Must
    Understand That There Is A Native Doctor That Supersede All Native Doctor
    Among All Native Doctor, If You Are In Search Of A Powerful Native Doctor
    With Great Spiritual Powers, Then You Must Be In Search Of A Native Doctor
    That Derives Power From The Marine World. That Is The Spirituality Of The
    Greatest Africa Native Doctor Obodubu.
    Dr Obodubu Is Recognized All Over The World Of Marine Kingdom, As One
    Of The Top Fortunate And Most Powerful Native Doctor Of Charms Casts From
    The Beginning Of His Ancestors ship Until Now Dr who lives Strong
    Among All Other Native Doctors, There Have Never Been Any Form Of
    Impossibility Beyond The Control Of Dr Obodubu. It Doesn't Matter The
    Distance Of The Person With The Problems Or Situation, All You Have To Do
    Is Believe
    In The Native Obodubu charms Casts That Works, He Always
    Warns Never To Get His Charms Casts If You Do Not Believe Or Unable To
    Follow His Instruction.
    It Is The Assignment Of The Native Doctor Obodubu To Offer
    Services To Those In Need Of Spiritual Assistance Not Minding The Gravity
    Of Your Situations Or Distance As Long As Water, Sea, Ocean, Lake, River
    Sand etc. Are Near You, Then Your Problems Of Life Would Be Controlled
    Under Your Foot.
    If You Need Any Spiritual Help On Any of These:
    Get Your Lover Back
    Fruit Of The Womb
    Fibroid
    Business Boom
    Financial Breakthrough
    Get Rich Without Ritual WhatsApp +2349058774809
    Do As I Say
    Bad Dream
    Promise And Fail
    Epilepsy
    Spiritual Attack
    Land/Court Case
    Mental Disorder
    Political Appointment
    Visa Approval
    Cancer
    Examination Success
    Spend And Get Back
    Good Luck
    Natural Health
    Hypertension
    Diabesity (Diabetic+Obesity
    Stroke
    Sickle Cell
    Impotency
    Win Court Case
    Promotion At Work
    Commanding Tone
    Protection Ring
    Marriage Success
    Love Ring
    Favour Ring
    Recover Lost Glory
    Spiritual Power For Men Of God
    Travel Success Ring
    Job Success
    Lotto/Pool Win And Many More.
    Make Haste To Call or WhatsApp Dr Obodubu Monday +2349058774809. Or Mail Him to
    babadoctorobodubuspiritualhome@gmail.com For Spiritual Problem Today And
    You Will Surely
    Get Solution To All Your Predicament.
    Email: babadoctorobodubuspiritualhome@gmail.com

    ReplyDelete
  12. Do You Need A Powerful Africa Native Doctor? I Mean A Spiritual Herbalist
    With Great Spirit Connected To Ancestors. Call or WhatsApp +2349058774809 Dr Obodubu Monday Is A High Voodoo Priest Master. He is a Spell Caster, Native
    Doctor, Spiritual Herbalist, Powerful Sickle cell Healer, Spiritual
    Astrologer, Psychic Reader, Multi Guru, Witch Doctor, Priest Of Africa
    Money Ritual.
    Have You Been To Native Doctor to Native Doctor Without Any Solution To
    Your Problems Or Rather Add To it? Have You Been To Place To Place In View
    Of A Powerful Native Doctor That Can Solve All Your Predicament, You Must
    Understand That There Is A Native Doctor That Supersede All Native Doctor
    Among All Native Doctor, If You Are In Search Of A Powerful Native Doctor
    With Great Spiritual Powers, Then You Must Be In Search Of A Native Doctor
    That Derives Power From The Marine World. That Is The Spirituality Of The
    Greatest Africa Native Doctor Obodubu.
    Dr Obodubu Is Recognized All Over The World Of Marine Kingdom, As One
    Of The Top Fortunate And Most Powerful Native Doctor Of Charms Casts From
    The Beginning Of His Ancestors ship Until Now Dr who lives Strong
    Among All Other Native Doctors, There Have Never Been Any Form Of
    Impossibility Beyond The Control Of Dr Obodubu. It Doesn't Matter The
    Distance Of The Person With The Problems Or Situation, All You Have To Do
    Is Believe
    In The Native Obodubu charms Casts That Works, He Always
    Warns Never To Get His Charms Casts If You Do Not Believe Or Unable To
    Follow His Instruction.
    It Is The Assignment Of The Native Doctor Obodubu To Offer
    Services To Those In Need Of Spiritual Assistance Not Minding The Gravity
    Of Your Situations Or Distance As Long As Water, Sea, Ocean, Lake, River
    Sand etc. Are Near You, Then Your Problems Of Life Would Be Controlled
    Under Your Foot.
    If You Need Any Spiritual Help On Any of These:
    Get Your Lover Back
    Fruit Of The Womb
    Fibroid
    Business Boom
    Financial Breakthrough
    Get Rich Without Ritual WhatsApp +2349058774809
    Do As I Say
    Bad Dream
    Promise And Fail
    Epilepsy
    Spiritual Attack
    Land/Court Case
    Mental Disorder
    Political Appointment
    Visa Approval
    Cancer
    Examination Success
    Spend And Get Back
    Good Luck
    Natural Health
    Hypertension
    Diabesity (Diabetic+Obesity
    Stroke
    Sickle Cell
    Impotency
    Win Court Case
    Promotion At Work
    Commanding Tone
    Protection Ring
    Marriage Success
    Love Ring
    Favour Ring
    Recover Lost Glory
    Spiritual Power For Men Of God
    Travel Success Ring
    Job Success
    Lotto/Pool Win And Many More.
    Make Haste To Call or WhatsApp Dr Obodubu Monday +2349058774809. Or Mail Him to
    babadoctorobodubuspiritualhome@gmail.com For Spiritual Problem Today And
    You Will Surely
    Get Solution To All Your Predicament.
    Email: babadoctorobodubuspiritualhome@gmail.com

    ReplyDelete