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

Guest post from Karyn: A Gift for You

A gift for you for International ME/CFS Awareness Day.

I know Awareness Day can be quite an emotional day for sufferers, so I’d like to offer everyone a small gift. It’s an unusual gift – so bear with me. It’s a piece of fishing line.

In the book “Operating Instructions” Anne Lamott tells a story about some autistic children who were so severely withdrawn that if you stood them up, they’d just fall over. But the people working with them discovered that if they ran a rope from one end of the room to the other and stood the kids up, holding on to the rope, they could walk across to the other side of the room. Over a period of time they gradually put up thinner and thinner pieces of rope, then string, then eventually some fine, almost invisible, fishing line. And the kids could still walk across the room as long as they were holding on to it.

But then (and this is what blows my mind about the story) the adults cut the fishing line into small pieces, and handed a piece to each child. And still the autistic children could get themselves across the room!

And so I want to give each of you a tiny piece of fishing line. So that you may have faith that, no matter how impossible the task seems, you can believe that one day we will all get to the other side of these diseases, have our independence back, and our lives back. As you hold that fishing line I want you also to know that it is a symbol of our connectedness to each other. We each hold a piece of that fishing line, we understand each other’s suffering, and we are all here for each other. I hope and pray that that little piece of fishing line can be your guidance, your support, your safety net, your strength, and your way forward. Love you all.

by Karyn Crimmin

Written for #May12th Awareness Day &  #May12BlogBomb#May12BlogBomb List of Links for 2015 

ACT UP for ME? Proxy Marchers will give us a Voice!

Chronically ill patients are often hidden by the very nature of their health conditions.  Unable to take to the streets in protest marches, their situations are often overlooked.

Certainly this is true for ME.  The most severely ill patients - who are of course the ones most needing change - are the least able to protest!  So what can be done?

ME Advocacy is a grass-roots organisation set up to try and give a voice to the most severely ill ME patients. Tomorrow, Tuesday, they will have student proxies marching in Washington DC appealing for more funding to address the issue of ME.

Indeed, one of those proxy individuals marching on the White House tomorrow will be doing so for me!

I sent the organisers of this event my photo and a short bio about my illness, which may seem an unusual move considering I live in N.Ireland!  However this problem of ME neglect is not a local one, and in my view patients worldwide should enthusiastically support one another's efforts towards change.

It is my view that what happens in USA can have far reaching effects on the treatment of ME patients everywhere.

So this is just a brief blog post to wish the organisers of this event every success. I may not be with them physically but my heart is hoping for the same changes that they seek.

Colleen Steckel, Susan Kreutzer, Gabby Klein, Mary Ann Kindel, Tracey Tempel Smith, Polly Gilreath, Kathryn Stephens and Joni Comstock have all put a huge amount of effort into the organisation of this event.

Thank you all for this brave move.

******

The press release shown in the image above is also available here:
Act Up for M.E. - Boots On The Ground In DC

You can contribute to the cost of this event here:

Donation Page: "Act Up for ME Funding" Demonstration

10 Things ME Patients Need Now  A post I wrote recently with N.Ireland in mind, but in truth I think these things are needed everywhere.

Calling All Bloggers!

#May12BlogBomb is back!!

May 12th is Awareness Day for ME, Fibromyalgia, Lyme Disease, Chronic Fatigue Syndrome and Multiple Chemical Sensitivity.

2015 Link List 

Every year bloggers use this opportunity to express their views and to raise the profile of these much misunderstood and often maligned conditions.


Last year I called for bloggers to promote their blogs using the hashtag #May12BlogBomb.  

I'm not sure we managed to get the #May12BlogBomb tag trending for the day (wouldn't THAT be an achievement) but it was certainly popular.

Hashtags are useful because they become hyperlinks, and clicking on one in a tweet or Facebook post, lets you see who else has posted something using the same hashtag.  This works both on Twitter and Facebook.

Following the #May12BlogBomb tag allows social media peeps to discover new blogs, read new points of view, connect with other bloggers, and generally to explore the subject further.

This year, like last year, I hope to collate a page of links to the blog posts written for the 2015 #May12BlogBomb.

It will become live on the morning of 12th May, get updated throughout the day, and if it takes off the way it did last year, it might take a week to gather all the links together.

Last year's list of links can be found here: May 12 Blog Bomb Link List  I have to admit, the response was phenomenal last year.  I had set out thinking I might collate a dozen or so links and was totally blown away by the number of blog posts I received!

So let's get this year's Blog Bomb EXPLODING  for 2015!

*****

P.S. I've just been asked if there is to be a theme this year.  Last year I suggested one and whilst there were many posts on that theme there were also many other topics explored.

I think were I to suggest a theme this year it would be on looking towards the future . So maybe "A Vision for the Future!" might be a suggestion.  In my view the aim of these posts is to reach out to the wider community and help them understand our lives, hopes and dreams...

Perhaps the angle of how your future would look if you were free of illness from tomorrow, would be good?

It's up to you!  I look forward to reading everyone's thoughts... 

******

List of links from 2014 can be found here: 
May 12 Blog Bomb Link List  

My Awareness Posts from 2014:
Ability for Agility: Why do I use Wheels?
Just ME: Why NOT Exercise?

Cargo Cult Cures!

To be "cured" of ME is every ME patient's dream.  Why then, do I cringe at some of the recovery stories online?

Perhaps it is the inevitable "recovery advice" that these individuals seem keen to offer. The message seems to be "Do just what I did, and you too will be cured!" Or at least that is how the media like to spin these stories.

Yet for those of us hoping to follow in the recovery path of these fortunate folk, we can end up finding the "cures" remarkably ineffectual.

Indeed it is my suspicion that a large portion of recovery is akin to rolling six sixes simultaneously on a set of dice.  In this context questioning the recovered individuals about how they achieved recovery, is about as useful as asking a person exactly how they rolled all those sixes!

Imagine if I got my six sixes (or my miracle cure) today - and then tried to work out why it was that I got my lucky break. Perhaps it was the fact that I ate a gluten-free diet, or that I'd been undergoing a new programme of therapy, or perhaps I might attribute my good fortune to something as surreal as wearing my lucky red socks!

The truth? In hind-sight it's very difficult to say which factor worked, or indeed if any of them had any effect whatsoever.

Yet for a good story, I'd be likely to pick my current favourite, and offer it up as "the thing" that helped me, and I'd hope that my strategy might provide the key for some-one else.

To be honest, I'm not critical of folk discussing strategies that have helped them. As many people know, I monitor my activity and heart rate daily, and am convinced that this strategy, along with a gluten-free diet is somehow helping me.

Nor am I being critical of patients trying to find something new that works for them.   Not at all, but I am cautious of individuals on the internet who promote their programmes and imply that if you do exactly as they did, then you too will be well! (And I really dislike the flipside of these programmes, where the patient is blamed for not fully adhering to the protocol when the programme fails.)

Which brings me to the title of this post.  Cargo Cult Cures - I wonder if some ME cures on offer, are a bit like the "Cargo Cults" that apparently sprung up after the Second World War.

The Cargo Cult story goes something like this: Villagers in isolated areas saw soldiers arrive and build airstrips and control towers, and soon after aeroplanes full of supplies arrived.  Later, after the soldiers departed, the villagers tried to employ the same techniques to attract further bounty from the skies.  It is said they built replica airstrips, replica control towers and even replica wooden radios.  When the supplies failed to arrive, they thought they must still be missing some vital detail, and so the replicas became more elaborate and detailed.  

I just wonder, in the absence of any real medical advances for ME, do we sometimes get caught up in creating our own Cargo Cult Cures? 

I admit I have various routines, and practices that I follow, in the hope that they will help me recover. I am in no position to be critical of anyone doing this.

I'm just urging caution, because until our condition is more fully understood, we really can't know if all our efforts are likely to pay off.

Cargo Cult Epilogue: Apparently much later, visitors to some of these areas arrived by aeroplane, giving rise  in the villages to the belief  that the Cargo Cult activities had succeeded.

So perhaps, until more is known, we need to be gentle with ourselves, and if a protocol is becoming more effort than it seems to be worth, we should not be too harsh on ourselves if we decide to let it go.