Circles of Influence & ME

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Part of coping with ME, I think, is about drawing circles around the things we aim to influence.

When I was well, I once attended a staff development session where we were asked to list all the things in the world we'd like to change.

Then we were then told to place each thing either:  inside our "Circle of Realistic Influence" or outside of it.  The take-away message was that we were to forgive ourselves for not tackling those things outside of our personal circles.

Now that I think back on this session, it makes me realise just how much ME sufferers must draw tight circles around their lives - often pushing more and more things outside of that circle of influence.

In fact even looking at what we can cope with on a daily or weekly basis, shows how we need to "Let Go!" of some things that, before illness, we took totally for granted.

I expanded the concept of having a single circle and did this one for me and my ME.

The innermost circle shows the things that are basic essentials for life, and in truth probably represent the sum total that the very severely affected can manage.

The next two rings are more personal, and could change over time depending on current circumstances. The "Less than Daily" circle looks a good list, but doing one thing on the list, is likely to mean that others must be abandoned.  So some items will be very infrequent. I created the graphic a few weeks ago - I might make some changes were I to re-do it today.

Finally, I thought long and hard about what to call the outer circle.  I didn't want to call it "Beyond My Ability" - even though that is really what the stuff there represents.  So I thought "Aspirations" would be much better.

I think perhaps for some-one newly ill with ME an exercise like this might help them to let go of certain things without guilt.  I remember early in my illness deciding that I had to totally let go of what happened to my garden.  I could no longer tend it myself, nor could I ask family to keep it up they way I wanted.  So I let it go.

One day perhaps I will be well enough to spread all my circles out again, so that my garden once more is tended as I would wish.


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Other thoughts about coping with an energy-restricted life:

Managing Illness through 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
Thoughts on Travel and ME Mar 2014
The Dilemmas of Exercise and M.E.  Dec 2013

What is ENOUGH?

Today is Severe ME remembrance day when we think of those too ill to leave their darkened, and eerily quietened, rooms.

Today once more, patients, families, carers and friends will try to alert the world and the medical establishment to the travesty of the "living dead" - those who are most severely ill and largely forgotten.

Last year I wrote a blog post called "Living Death Disease" to try to highlight this incredibly mis-represented and misunderstood situation.

A quick look on social media today under the tag #SevereME will bring up scores of blogs, videos, tweets, links, and messages. (Please look, like and share as much as you feel able.)

Yet advocates have been campaigning for change for decades.  The history of how some ME patients have been treated by the establishment makes for harrowing reading.

A short quote from MAGICAL MEDICINE:HOW TO MAKE A DISEASE DISAPPEAR (Hooper 2010) illustrates a pervasive attitude:

"In 1992, the Wessely School gave directions that in ME/CFS, the first duty of the doctor is to avoid legitimisation of symptoms; in 1994, ME was described as merely “a belief”; in 1996 recommendations were made that no investigations should be performed to confirm the diagnosis and in 1999 patients with ME/CFS were referred to as “the undeserving sick”. "

So how can we do ENOUGH to tip the balance in our direction? 

What do we need to do, so that the rest of the world will look on in horror and shout "ENOUGH!" on our behalf?

How can we persuade ordinary doctors, who receive inadequate training on how to cope with ME, to champion our cause?

I don't have ready answers.  

Physically, I may not be up for placard waving or protest marching but I can blog, I can use social media, and I can work with others to push for change in my own area.

I am proud to be a trustee for Hope 4 ME & Fibro Northern Ireland  and I will continue to campaign for change in whatever way I can.

Please join me and others, in highlighting this situation - because surely, by now, we've all HAD ENOUGH!!

It's time for change!

Severe ME must be validated as the devastating physiological illness that it is.  Substantial research funding must be secured to investigate its etiology, and the psychiatric premise for ME treatment must be fully discredited and discarded.

What the medical authorities currently regard as enough, is simply NOT enough!

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PS Yesterday a fellow blogger asked me if I was going to publish something today.  I replied that I was in a bit of a dip, and wasn't sure that I would.  Yet last night when I read what he had written, I knew I had to say something!

Please read this piece by Henry Anderson:
A blog about my cousin for Severe M.E Day – 8th August 2015

Edit to add:
Two more powerful stories illustrating exactly why we need change:
Limited Capability: Severe ME Day 2015
Living with Severe ME and Random Things: Severe ME Awareness #SevereME

Green spaces for ME

 I keep reading articles about how studies have shown that having access to gardens and other green spaces helps people to cope - and I agree.

Yet, when I read some ME articles, these comments are usually intertwined with our need to remove stress from our lives so that we can recover! That is less easy to agree with.

Take this recent conversation - I was told;

"If you would just take time to appreciate the goodness in your life, your recovery would quickly follow." 

I suspect this lady, was allowing her pre-conceived notions about ME to cloud her impressions of me.  She certainly didn't know much about my life.

Anyway, I'm proud to say, I was very "zen" about this interchange.  I was not up for a debate in that moment, so I took a deep breath and then let it go!

You see I love green spaces and am very appreciative that my personal situation allows me so much access to nature.  Indeed, one of the main reasons I took to using a scooter so early in my illness, was to be able to get outside more.

But neither the "appreciation" nor the "green spaces" are going to cure me of ME!

It's just that being outside is such a nice place to be.


Immersing ourselves in nature allows us to leave some of our struggles behind as we just lie back and watch:

- the wind
- the clouds
- the trees
- the birds
- the bees
- and all the rest of nature

. . . as nature carries on  regardless of us, and our struggles.

POST Emptive Rest

Extra rest prior to an event is often suggested for ME patients.  It seems that this Pre Emptive Rest helps - not because we can really "bank" much energy in advance - but because we can start out with as little energy depletion as possible.  However I think POST-Emptive rest is also vital.  That is rest after an event but before the payback kicks in.

Post Exertional Neuro-immune Exhaustion (PENE*) describes what happens to ME patients after minimally extra exertion.  Most ME patients employ various pacing techniques during an event to lessen these effects.  

Yet occasionally life happens and we end up doing more than we should...

Ironically, after an outing I often find that adrenalin, and other happy hormones persuade me that I'm not really so very ill at all, and I find I'm at risk of "riding the roll" and doing a bit more for a whole 24 hours after an event!

Listening to others talk, and it would seem I'm not the only one.  The temptation to get things done, whilst the going is good is huge!

However this window is a danger time, because for me the worse of the PENE falls 48 hours after the event.  That's when the inflammation response is likely to go for my head, my muscles, my joints, my eyes, my ears..... etc. etc.

And if I've carried on doing things in between the event and the PENE hitting, then surely that is going to make everything so much worse when the time comes??  

This is why we also need rest directly after an event.  Perhaps we should name this rest too.  I suggest we call it:

Post Emptive Rest: This is real rest AFTER the event but before the onset of PENE.  It is central to how I manage my life now!

You see, I have one thing I really don't want to give up doing.  I do agility with my dog Finn, and to do this I take extra rest both before and after the event... (& I also take quite a few other precautions to get my 60 seconds in the ring, but that is another story. ;) ) 

Anyway in my view Post Emptive Rest on the day after a bigger-than-normal day is the most important rest of all, because in my experience doing something extra two days in a row has never ended well.

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Other Thoughts of mine on this:

Well enough to drink coffee? May 2015
Do you STOP soon enough? March 2015

"Play-Up & Lay-Up" not "Boom & Bust" Sept 2014

*PENE is also called PEM (Post Exertional Malaise).

Guest Post from Holly - Thanks & Thoughts on "Brave"!

Holly first wrote this as a comment beneath the links for this year's May12BlogBomb.  With her permission I have shared her comment as a guest blog: 

Thank you for putting all of this together! 

Thank you to each person who wrote a blog! 

I shared this on my page today and I wanted to pass it along to all these brave warriors who are participating today!


"Maybe there’s a way out of the cage where you live
Maybe one of these days you can let the light in
Show me how big your brave is"

Those words from the song "brave" make me think of the amazing people battling ME. They show me how big their brave is all the time. This community of people inspires me to have courage and speak up. Many people I am familiar with from their online work: the blogs, social media, and online forums that serve as the gathering place for a community of people unable to physically gather together. Others I have come to know well and am lucky to call them my friend. I wish you could know these people and hear their stories. I just think once that happens there is no way we as a society can not take action in the fight against this serious, debilitating illness. Some severely affected by this illness, bravely and painfully type out one letter at a time slowly over days from their beds to write a few sentences to spread awareness and implore others to support much needed research. Many sacrifice precious energy and time to advocate for others. They write government officials, organize events, maintain blogs, and raise funds. I see kindnesses every day in this community. I have certainly been the recipient of many kindnesses and these kindnesses are from people that are in the midst of the fight of their life. Yet, they take time to encourage one another and speak up for one another. It feels like the bond between soldiers fighting the same enemy. We fight for one another. We truly live out the "no man left behind." I am honored to be allowed to participate in this community.

For those battling this illness: I want to take a moment to thank each person that has touched my life in some way. I am proud of your efforts! I see your struggle. I acknowledge your pain but mostly I see the lovely human being that you are. I see you! Yes, this illness is an overwhelming force in your life. However, you as a person have chosen to be an overwhelming force for good in this community. Thank you!

For our allies: Thank you so much for taking time to learn about the illness. It really does mean the world to us when people take time to try and understand. Please help magnify our voice. We have so much to say but sometimes we need healthy allies to be seen out in the world. Many of us are unable to go to meetings, stage protests, show up in the halls of Congress, run a race, pass out fliers, etc. We have some amazing individuals who have pulled off these feats but we need more! A good start is to share a story you have read, a graphic that hit home, a video that opened your eyes. Help others to see us and to hear us. Help us show the world how big our brave is!

#MEawareness #May12 #May12th #May12BlogBomb

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Thank you Holly for this lovely comment. xx