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

Early in my ME encounter I was told to avoid "Boom and Bust" and to aim for day to day consistency.

I was also given the advice:
"Do only 60% of what you can sustain without producing symptoms".

Now these two bits of advice are excellent, but not at all easy to achieve.  After all, if I really DID do so little, as to never produce symptoms, then how would I know if I was starting to improve?

I was thinking about this dilemma recently, and being a science teacher (prior to ME) I couldn't resist a few graphs to help me think all this through!  Perhaps they'll help you too?

THE GRAPHS

1. PACING ZONE.  In an ideal world our daily activities would fluctuate very little.  The wiggly blue line on this graph shows only minor day to day change. I aspire to this!  I am told this gives my body the best chance to heal itself.

Click any image to enlarge

2. BOOM & BUST!  We all recognise this one!  Something comes up that we want to do - and we do it!  The thrill of the "doing" releases some adrenalin - so we keep on doing that activity.  It's the classic BOOM scenario.  I often hear folk talking about getting as much done on their good days as they can.... 

However, once we come down off this high we experience a big crash downwards, and for several days or more we are in the BUST ZONE and totally unable to do our normal activities!   If lucky, we can BOOM & BUST and not loose any long term ability.

3. BOOM, BUST AND DECLINE....  This scenario is much more frustrating.  Sadly it seems to be the one I find myself in.  Any incursion into the BOOM ZONE, not only causes a crash into the BUST ZONE, but also changes my boundaries - apparently permanently..... (I called it a lowering of my glass ceiling in a previous post.)

The incentive to avoid BOOM AND BUST is therefore much higher, than if I could simply do a week's payback to recover previous levels.  

4. PLAY UP & LAY UP.  This is my compromise for those special moments.  It is a very cautious move away from the PACING ZONE, involving voluntary LAY UPS  both before and after the activity.

The "PLAY UP" moment is controlled as tightly as possible.  I stop the activity while I still feel able to do more and start the Post Activity LAY UP no matter how well I feel.   It is not easy.  If I've got it right then I should have almost no symptoms.  Ironically, it also might seem to others that my condition is not so severe - because I tend not to enter the BUST ZONE!

OTHER THOUGHTS:

THE RANDOM FACTOR.  This is something that we might all encounter.  A life event, or a viral infection or other wild card, can change the best laid plans.  We can't control everything, but I feel we owe it to ourselves to treat our bodies as best we can.  

TESTING BOUNDARIES?  Obviously each time I succeed in "playing up" with out problems, I learn some-thing about where my boundaries lie.  Further, by noting any small symptom responses, I can better judge how much to attempt next time. 

SELF DISCIPLINE is key, because often I'll have to back out of something that I feel well enough to attempt.  Friends are also likely to say things like, "Sorry you weren't well enough to join us...." and this makes me feel frustrated, because they are probably imagining me much more unwell than I actually am.  Yet the concept of Laying Up is hard for well folk to grasp.  

GOING FORWARD?  I'm hoping that careful PACING with a little bit of Play Up & Lay Up will help me sustain my current levels and ultimately give my body the chance to heal itself... 

I no longer expect recovery to be anything other than a slow process!

*********************

Post linked in this article:  The Exercise Catch22!

Links to more of my thoughts here:

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

Monitoring Activities for Pacing:
Monitoring ME: Part 1 - Fitbit Sept 2014
Rhythm+ and Endomondo: HR monitoring for ME Aug 2014
A few notes on using a HR Monitor for Pacing Feb 2014

Pacing for M.E. - And Using a Fitbit  Dec 2013

Sarah's Marathon Swim for ME

Some people will go to great lengths to raise awareness for ME!

Sarah Loveland is one such individual.   This Saturday she will be doing the 5.25 mile "Chill Swim" in Coniston Water, Cumbria.

This will be no small challenge to Sarah.  Just two years ago, having not swum for 20 years, she happened to watch the "Great North Swim" at Lake Windermere.  She says:

"I just got it stuck in my head that I wanted to do it!"

However when she started training, she discovered she could do no more than half a length at a time!!  Undaunted, she took pool and open water swimming lessons to improve her technique and stamina. The following year she swam that "Great North Swim" herself!

"As soon as I started swimming in the lake I was totally hooked!"

Now she is aiming much higher.  Inspired by a Face Book friend who suffers from ME (and did a sponsored walk to her garden gate), Sarah has dedicated her Coniston Water swim to raising funds for Invest in ME.

Click on image to magnify - thanks to the organisers for the image

To date the farthest Sarah has swum in open water is 4 miles and unpredictable weather can make this sort of swim much more difficult!  As Sarah says:

"Don’t go thinking that I love swimming and 5.25 miles is going to be a breeze. It’s definitely not. I discovered that swimming in choppy water is something that scares me."

And swimming within a large group may also be a challenge.  Ever pragmatic, Sarah says:

"All I have to do is swim from one feed boat to the next, get some energy drink, gel or jelly babies (different boats have different things) and then onto the next."

Here's hoping that on the day the waters will be smooth and that the almost 5 hours that it will take Sarah to complete the swim will pass easily.

If you would like to sponsor Sarah on her epic swim then please visit

Sarah's Just Giving Page for Invest in ME

or use your phone to text in your donation:

A final word from Sarah:

"I will be swimming not just for me, but for all the people that would love to be able to get in the water and swim, but are unable to through illness."

Thank you Sarah, there will be many people willing you onwards on the day. 

Links:
Invest in ME

Sarah's Just Giving Page for Invest in ME

Sarah Loveland's Blog: My Swimming Journey

Article in Chronicle Live about Sarah's Swim

PS Sarah finished her swim in 4 hours 19 minutes!!  What a fantastic achievement!  
Her account of her swim can be read here: I swam the length of Coniston - all 5.25 miles of it!

Guest Post from Anne Keith: Why is deceptive ME research tolerated?

Anne Keith recently made an excellent comment on Facebook in response to this video:

With a few edits for clarity, this what she said:

So very sad.

Myalgic Encephalomyelitis (M.E.) can be extremely devastating yet there is a whole group of psychiatrists who try to dismiss this as an imaginary disease caused by pessimism, over-exaggeration, or activity-avoidance.  Would a teenager really stay in bed for years, allowing herself to be tube-fed, because she is whiny? Have you ever met anyone willing to suffer 50 hospitalizations for fun?  Did this girl decide to die because she was lazy or because she was unbearably sick?

Ridiculous and insulting doesn't begin to cover the off-handed dismissal of such deep suffering.

Early on, a psychiatric explanation was one of many theories which deserved to be explored. That was long ago.  It was shown to be unfounded years ago, when the physical underpinnings of M.E. began to be documented.  Despite a paucity of research funding into the physical causes of M.E., it has now been shown to most likely be an auto-immune disease, often initially triggered by minor viruses.  Numerous physical abnormalities have been found by a wide variety of top-level scientists throughout the world.1

Any claim that this is a psychiatric disease is now driven by three things: egotism, greed, and ignorance.  Members of the "Wesseley School," mostly in Britain, decided early on that M.E. (which they now call Chronic Fatigue Syndrome) must be mental illness even though they had nothing to back up their guesses.  They happened to be in influential places at the right time and they increasingly shaped the perception of this illness.  They are clearly aware of all the physical findings yet they neglect to mention or act on these "inconvenient" facts.  Their self-serving refusal to include these findings is scandalous.

Their flood of misinformation has left both the public and most treating physicians in ignorance.  The truth is that, just as multiple sclerosis is not "faked" (as once claimed by psychiatrists), and as epilepsy is not caused by demons (as "everyone" once knew), so M.E. is not caused by "wrong-thinking" or "activity avoidance."  There are well-known immune abnormalities and a very unique - and dramatically abnormal - response to exercise that can be definitively shown by a 2 day treadmill test.2

It is time for the medical community, and for the public at large, to denounce this group’s disingenuous "research."  Their studies, including the massive ‘PACE’ study in England, intentionally exclude the sickest patients while they include those who merely report "being tired" (that is, who do NOT have the illness' distinguishing symptom of an abnormal response to exertion).3

This group’s studies could be compared to someone claiming to do lung cancer research which excludes those dying of lung tumors while including those who have a "tickle in their throat."  Just as no doctor would accept any study that defined lung cancer as "a cough," so no doctor should accept any M.E. study which defines this illness as "fatigue."  Doctors would denounce the "cough” study’s claim that over-the-counter syrups and cigarettes improved patients’ outcomes.  In the same way, they must denounce "fatigue" studies that claim “right-thinking" about symptoms and/or increased exercise cures M.E.  Patients are being directly harmed by such ego-driven, self-serving "research."

It is just wrong that these people have abundant funding while far better researchers (such as Lipkin, one of the world’s best virologists) are forced to literally beg in order to get basic funding to research this illness.4,5  It is past time to stop funding junk studies and start appropriately funding real research that further explores the physical causes of this catastrophic illness.

What can you do?  Shine a bright light on this scandal.  Share stories like this one as widely as you can.  Help support M.E. advocacy, often done on a shoestring by suffering patients.  Ask your politicians to fund REAL research instead of wasting money on poor studies designed to support psychobabble treatments.  Tell the stories of M.E. patients you know (with their explicit permission, of course) so that they no longer suffer in silence and obscurity. Most of all, speak up when you hear someone say "everyone" knows M.E. is the same as depression, laziness, or normal fatigue - and clearly state it is anything but that.  Help stop the self-serving psychiatrists, who appear determined to further their own interests (science and patients be damned), so that not even one more patient has to experience the living hell that Lynn and her mother suffered.

*****************

Further information:

1. International Association for Chronic Fatigue Syndrome/ Myalgic Encephalomyelitis:
Home page with international conference details, letters requesting funding etc.

2. Two Day Exercise Testing:
Discriminative Validity of Metabolic and Workload Measurements to Identify Individuals With Chronic Fatigue Syndrome

3. PACE Trial:
Tom Kindlon's comment in The Lancet
Pace Trial Recovery Rates: Magical Medicine - comment on Invest in ME website

4. Invest in ME research seeking funding:
Current and Future Research Projects

5. Lipkin's Microbiome Study seeking funding:
The Microbe Discovery Project


Other blog posts on Just ME:
Living Death Disease
Karina's Story - A Modern Tale of Horror

Image from Wendy Boutilier

Rhythm+ and Endomondo: HR monitoring for ME

I have once again taken up monitoring my heart rate (HR) to help manage ME.

The system I use combines the Rhythm+ armband monitor, with the Endomondo app for my iPhone. [Edit Jan 2015 I now use a Mio Alpha HR monitor, which also "talks" to Endomondo.]

Heart Rate Monitor:  Rhythm+ by SCOSCHE 

The monitor "optically measures blood flow" - which basically means it uses lights.  The promotional material says it is for use on the forearm but I have also strapped it to my ankle successfully.  

It charges via a handy docking station, so no expensive batteries.  The blue dots are my addition so that I put it in the right way around!

The device is MUCH more comfortable than a chest strap monitor, and also seems to transmit much more reliably.  In fact provided there are no solid walls in the way, it can transmit across quite a distance.

The thing that felt strange at first, was that the monitor doesn't have it's own readout.  However, it sends the data via bluetooth to a variety of phone apps. I chose Endomondo.

Phone App: Endomondo

Once monitor and app are all set up to communicate with each other, this is very simple to use. And it is not just a HR monitor, you can also link it to your phone's GPS and so see where you've been on a map and track your speed and distance!

I mostly just use the HR feature and the read out looks like this.

 The slider at the bottom appears so that the display continues, but the screen is locked.

After finishing the "session" a summary can be accessed:

And also a time-line, showing how HR varied through out the activity:

There is also a chart showing how long was spent in each "zone".  I edited these zones online so that the the boundaries between the zones are: 60, 80, 100, 120 and 140.  

Here you can see I spent almost 3 minutes above 120 bpm.

The phone data is only available immediately after the session.  However the data is transferred to your online Endomondo account via Wifi.  All the sessions are then stored for later analysis.

The graph in particular is easier to interpret online.  

There is a facility to tag and name each session.  I tend not to bother, but rather just use the system for feed back whilst active, and then when I review things later that day on the computer.

Anyway, it's all very interesting, and I think monitoring my HR is definitely helping me understand where I spike my HR and therefore what activities I need to be careful with....

..... more thoughts on that later.

In the mean time I hope others have found this review useful, and might be encouraged to also start monitoring their activities.

It's not going to "cure" ME, but hopefully as a sort of budgeting tool, this can prevent me from becoming "over-drawn" on my energy account and incurring a high-interest payback later.

PS [Jan 2015]
I now use a Mio Alpha HR monitor that has some advantages over the Rhythym+
1. It has a read out like a watch
2. It can run all day on an overnight charge
3. It has an alarm function that beeps when my HR goes too high.
It can also "talk" with Endomondo on my phone so that I still get my pretty graphs!
Sue Jackson describes her Mio Alpha in a blog post here

Some more of my Heart Rate Monitoring posts can be found here: Just ME INDEX 

***************

Other posts on Monitoring Activities for Pacing:
Monitoring ME: Part 1 - Fitbit Sept 2014
A few notes on using a HR Monitor for Pacing Feb 2014

Pacing for M.E. - And Using a Fitbit  Dec 2013

Black Dress Selfie Parade! #3

An earlier post explains where the idea of the Black Dress Selfie for Severe ME came from.

Photos are shared across three blog posts:

Black Dress Selfie Parade #1
Black Dress Selfie Parade #2

Black Dress Selfie Parade #3 (this post)

And this third page full of images is still growing!!  WOW!

Anne

 Deanne

Emma 

 J

 Kerstin

 Meg

Charlotte

Blog post for Black Dress Day

 Bambimax

 Liessa

Sian
 for Irene Romanov too who passed back in February after 38 years with severe M.E
Blog post for Severe ME

Dizzy Anne

Sarah

Blog: A Little Black Dress for ME

Annette

Alison

 Claudia

 Lorraine

Mel
Mel says: I know it's not a black dress but this is the dress I was going to wear to prom but never made it to prom because of my illness m.e really does affect every part of your life.

Samantha

 Allison

Debra

Kelli

Jo

Ellis

Noreen xx

Myra

E.b.
Covered in freshly washed black laundry today for #severeMEday ‪#‎wearblack‬ ‪#‎zerospoons‬ because getting dressed is not an option ‪#‎thisiscfsME‬

 Janelle

Karen

Elizabeth

Thank you to all who have shared their pictures to raise awareness of:

August 8th - Severe ME Day.

Other pages:

Black Dress Selfie Parade #1 

Black Dress Selfie Parade #2

Black Dress Selfie Parade #3 (this post)

Images from Black Dress Day are also being posted in a gallery format at:
Dozy Days Blog

After Notes:

Severe ME Awareness Day - 8th August was launched by the 25% ME Support Group
 25% ME Support Group website
 25% ME Support Group - Severe ME Day 2014

To find out more about Sophia Mirza and the tragedy of her death,
see the Invest in ME website:
The Story of Sophia and M.E. 
and watch this video: 
The Death of Sophia Mirza

More information about Severe ME can also be found on the Stonebird website:
Stonebird: The Lived Experience of Severe ME

And I have also written about Severe ME in a previous blog post: 
Living Death Disease??