A few notes on using a HR Monitor for pacing

 Dr VanNess recently suggested that ME patients should keep their HR low.

 (Since Summer 2014 - I've now returned to wearing a HR monitor all day every day. This blogpost was written after my first round of HR monitoring using a chest strap monitor.  I stopped with that monitor because it was so uncomfortable and unreliable.  The new watch varieties are much more life friendly.)

I wore a Heart Rate (HR) monitor for 6 weeks once - all waking hours!  The following are a few notes on what I found out:

Things that elevated HR included:

• arguments
• exertion
• moving quickly
• lifting things (esp above head - eg cup from high shelf)
• walking at anything beyond a very slow amble
• concentrating on a debate (either online or RL)
• anything vaguely defined as an "activity"!

Resting HR also went up gradually through the day.  On PEM (post exertional malaise) days HR was higher throughout

 I found that I could bring my HR down by:

• Using relaxation techniques
• Stepping away from the computer
• Getting away from others and the need to converse
• Lying back and dreaming of a beach
• Going to bed! (Or at least getting my feet up.)
• Stopping what I was doing & waiting a bit before restarting
• Sitting down for tasks - eg on a stool to chop veg for dinner
• Doing breathing exercises 
• Stroking the dog!

A Strategy for Keeping HR low:

• Do things slowly and with rest breaks.  
• Limit stimulating environments or situations.
• Intersperse activity days (eg meeting a friend for coffee) with non-activity days
• Don't ever push on anyway.  Not ever!  Listen and rest.
• Accept help.
• Shop online rather than pushing a trolley.
• Read more (as a distraction from "doing" more).
• Accept some things are too much
• Find other outlets instead.
• Keep talking to the dogs.

Compromise?

I have decided that the occasional 1 or 2 minute high is less damaging than an elevated HR all day. So those little bits of excitement (for me doing agility with my dog) could perhaps still fit in there.

But not on days where my resting HR was elevated ( ie I was already in PEM).

I also found that a HR monitor with a chest band, and bulky watch, is uncomfortable, unreliable and expensive on batteries.  It is not a long term solution.  More recently I have found a watch that can take my pulse when I place my finger on a sensor.  Much easier to integrate into my life altogether!

This is the one I found on Ebay - cheap and cheerful and very effective.

[Edit Jan 2015 - I have now been HR monitoring daily for several months, and have started to use a Mio Alpha HR monitor with an app called Endomondo on my phone. Details of the graphs Endomondo produces can be found here.]

Further Reading:

However for those interested in more about using a HR monitor for pacing for ME, check out this blog post from Jennie Spotila:

http://www.occupycfs.com/exercise-testing-and-results/

Also on my blog:
Exercise The Catch 22
Why NOT Exercise?
Pacing for ME and Using a Fitbit

Index of posts on my blog, including more recent pacing thoughts here:
Just ME: Index

Another 5 ME CFS FMS Blog Awards

I hope to give this initiative a little bit of momentum with a few more ME CFS FMS Blog Awards.  Yesterday, I concentrated on blogs in the UK (or at least that is where I think they are located) and so some of today's nominations are going further afield.

Today's Blog Nominations:

Occupy CFS: 

http://www.occupycfs.com/

This was probably the first ME/CFS blog that I found, and what a gem of a blog it is too!  Jennie is very knowledgeable about both this illness and the politics surrounding how our illness is treated. However it was her extensive posting on the use of a heart rate monitor that captivated my attention and so I highly recommend this post series in particular. 

Around with the Hound          &           Documenting ME:

http://aroundwiththehound.com/  &     http://documentingme.net/

I couldn't resist Around with the Hound.  Partly because I love dogs, and used to own a greyhound, but also because I'm fascinated by the versatility of service dogs.  Yet Dee Dee is so much more than just a service dog, and the relationship between this dog and her human really leaps out of the blog's pages. Just take a glimpse of the posts in the archive and spend an easy hour or two reading! I can't mention this blog however without also including this recent thoughtful post from Brooke's sister blog Documenting ME: Hope and Facing Reality.  Two great blogs.

The ME Mum's Confessions:

http://fryvil.com/m-e-mums-confessions/

This is a blog by a group of Norwegian mums who are posting about their experiences with getting treatment for their children with ME.  They have launched something of a crusade to get the situation noticed and many of their posts have been translated from Norwegian into English in order to get wider coverage. This post describes one mother's dealings with the authorities.

Counting My Spoons:

http://fibrokitty.blogspot.co.uk/

I like the diversity of this blog - from eating-out Gluten-Free to "Fibro Warrior Wednesday" guest posts.  This well established blog is well worth looking through.  I found an excellent post called "What's Fibromyalgia Feel Like?" that I think many Fibro sufferers will easily relate to - and despite the honesty some of the analogies will give you a giggle.  Third one in: It's like some-one vacuumed me!

Cranky Fibro Girl:

http://www.jennyryan.com/

This is another blog where even the "Home" page has me gently chuckling.  There is something very healthy at being able to laugh at oneself, and there is plenty of humour here.  I found the blog by following a link, but as  you are welcomed there is a suspicion, from Cranky Fibro Girl, that - "my mom asked you to stop by as a personal favor to her".  Check out the About tab while you are there, and also this post on Doctors!  

So that is my round up of blogs.  I hope you enjoy them, and are tempted to visit a few new blogs as a result.  Congratulations to these wonderful Blog Award Winners.  I hope you will take pleasure in passing the Award forwards - but I fully understand if it's all too much hassle.  ;) 

The instructions are below:

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

ME & CFS & FMS BLOGGER AWARDS:

Awarded by bloggers, to other bloggers, to acknowledge outstanding endeavour in promoting awareness of Myalgic Enchephalomylitis (ME), Chronic Fatigue Syndrome (CFS)  and/or Fibromyalgia (FMS).

The blogs receiving the awards do not need to be dedicated solely to ME, CFS or FMS, but they should contain at least one post that has helped to increase awareness.

It is hoped that these Awards will increase blog readerships and also encourage networking between ME & CFS & FMS bloggers themselves.  No matter the title of our diagnosis, patients of these conditions all suffer from a frustrating state of health that is poorly recognised by most of society.

HOW IT WORKS:

1,   On receiving the ME & CFS & FMS BLOGGER AWARD, you should be directed to a post that describes why you (and others) have been given this award.  The page will also include this set of instructions and the two award images.

2. Please note, you do not need accept the award.  The aim of the awards is about recognition and a bit of fun, NOT extra work! Please do not feel pressured to participate.

3. To claim your award:

a) Create a new post on your blog, in which you thank the individual who gave you the award  (remember to include a link back to their blog).  You can then copy the images to your blog post and/or side bar as you wish.

You may need to click on the image and download it, before putting it into your own post.

Below is the code for adding the small image as a link in your blog side bar if you wish to do so:

<a href="
http://sallyjustme.blogspot.com/2014/02/launching-me-cfs-fms-blogger-awards.html
" target="blank">
<img src="http://i68.photobucket.com/albums/i4/salpublicphotos/BloggerBadge_zps26d28ded.png"/>
</a>

b) List three to ten blogs that you would like to recommend, giving a brief description of why you think each one is special.  A couple of lines is fine, but be sure to include a link to each blog you name (or specific page if you prefer) so that others are encouraged to visit.

c) Copy and paste these instructions into your post. Copy from the first *** above, to the last *** below to ensure that every thing is included. (Add the images separately if they don't copy automatically. Control-Shift-V also removes crazy formatting during pasting if that is a problem. ;) )

d) Alert your chosen blog owners to their awards by making a comment on the most recent post of their blogs.  The comment could simply read:
"Congratulations, I have nominated your blog to receive an ME & CFS & FMS BLOGGER AWARD.  Please visit <insert link to the post you have just created> to collect your Award"

3. Hopefully these awards will spread far and wide.  I would love to keep track of where the awards end up, so I would be very grateful if participants would also copy their list of awards into a comment beneath this post:
http://sallyjustme.blogspot.com/2014/02/launching-me-cfs-fms-blogger-awards.html.
I hope that collecting all the recommendations in one place will help each of us to find and explore new blogs.

THANK YOU ALL FOR PARTICIPATING.

Sally
http://sallyjustme.blogspot.co.uk/


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

My Nominations for the First ME CFS FMS Blog Awards

After much mulling over this whole idea, this post finally sends out the first ME & CFS & FMS Blog Awards.  Their aim?  To reward diligent bloggers, and to help us all to seek out new and interesting blogs.  (More details below my nominations.)

Choosing the first blogs to send this award to was incredibly difficult - not least because I'm useless at bookmarking blogs I like!  So the 5 blogs I've chosen today are just a start... I'll use the excuse that I need to pace myself!!

So, I've kept back some amazing blogs (in my newly created list) for future nomination.  The blogs below are in no particular order....

My Nominations are:

Let's Do it For ME Blog: 

http://blog.ldifme.org/ 

The team at "Let's Do it for ME" have been fundraising for the charity Invest in ME and writing about the many different initiatives taken for the cause.  The blog has been running since 2011 and this post describes their campaign.  Amazing work, from amazing people for an amazing charity! 

Ramblings of a Fibro Fogged Mind:

http://ramblingsofafibrofoggedmind.wordpress.com/

First off, I just LOVE the name of this blog!  However if you take a read here, you will see the writings of some-one dedicated to furthering the cause of the downtrodden, and in particular those with Fibro.  I thought this post written for Fibro Awareness Day last year was particularly good.  She both describes living with Fibro, and some of the science behind current understanding of Fibro.

Barry's M.E. Blog:

http://barrysme.blogspot.co.uk/ 

This is a very new, but perceptive blog written by a young man suffering with ME.  This post on Deteriorating Friendships is likely to resonate with many ME and Fibro patients.  And it's not just this post, throughout his blog Barry shows clear insight into what it is like to live with a disabling illness like ME, at a time when the world just expects us all to keep going.

Crazy Purple Mama Blogspot: 

http://crazypurplemama.blogspot.co.uk/

 Well who wouldn't warm to the name of this blog?  And the warmth of the name is further reflected in the writing.  Here you'll find a mother coping with two daughters diagnosed with ME.  Yet the blog has an upbeat and quirky feel, that I can readily relate to.  Tanya writes a poignant post here about When it All Changed.  I think we all have a photo like the one featured here....

But You Don't Look Sick: 

http://but-you-dont-look-sick.blogspot.co.uk

This well established Fibro blog is packed full of sound advice and stories of life with Fibro.  I think her post, here, about coping with the inevitable flare-ups that come with an illness like Fibro, is very perceptive and probably should be recommended reading for new sufferers. There is also a call to action for all Fibro and ME patients - take a read here.


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

ME & CFS & FMS BLOGGER AWARDS:

Awarded by bloggers, to other bloggers, to acknowledge outstanding endeavour in promoting awareness of Myalgic Enchephalomylitis (ME), Chronic Fatigue Syndrome (CFS)  and/or Fibromyalgia (FMS).

The blogs receiving the awards do not need to be dedicated solely to ME, CFS or FMS, but they should contain at least one post that has helped to increase awareness.

It is hoped that these Awards will increase blog readerships and also encourage networking between ME & CFS & FMS bloggers themselves.  No matter the title of our diagnosis, patients of these conditions all suffer from a frustrating state of health that is poorly recognised by most of society.

HOW IT WORKS:

1,   On receiving the ME & CFS & FMS BLOGGER AWARD, you should be directed to a post that describes why you (and others) have been given this award.  The page will also include this set of instructions and the two award images.

2. Please note, you do not need accept the award.  The aim of the awards is about recognition and a bit of fun, NOT extra work! Please do not feel pressured to participate.

3. To claim your award:

a) Create a new post on your blog, in which you thank the individual who gave you the award  (remember to include a link back to their blog).  You can then copy the images to your blog post and/or side bar as you wish.

You may need to click on the image and download it, before putting it into your own post.

Below is the code for adding the small image as a link in your blog side bar if you wish to do so:

<a href="
http://sallyjustme.blogspot.com/2014/02/launching-me-cfs-fms-blogger-awards.html
" target="blank">
<img src="http://i68.photobucket.com/albums/i4/salpublicphotos/BloggerBadge_zps26d28ded.png"/>
</a>

b) List three to ten blogs that you would like to recommend, giving a brief description of why you think each one is special.  A couple of lines is fine, but be sure to include a link to each blog you name (or specific page if you prefer) so that others are encouraged to visit.

c) Copy and paste these instructions into your post. Copy from the first *** above, to the last *** below to ensure that every thing is included. (Add the images separately if they don't copy automatically. Control-Shift-V also removes crazy formatting during pasting if that is a problem. ;) )

d) Alert your chosen blog owners to their awards by making a comment on the most recent post of their blogs.  The comment could simply read:
"Congratulations, I have nominated your blog to receive an ME & CFS & FMS BLOGGER AWARD.  Please visit <insert link to the post you have just created> to collect your Award"

3. Hopefully these awards will spread far and wide.  I would love to keep track of where the awards end up, so I would be very grateful if participants would also copy their list of awards into a comment beneath this post:
http://sallyjustme.blogspot.com/2014/02/launching-me-cfs-fms-blogger-awards.html.
I hope that collecting all the recommendations in one place will help each of us to find and explore new blogs.

THANK YOU ALL FOR PARTICIPATING.

Sally
http://sallyjustme.blogspot.co.uk/


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

Launching ME & CFS & FMS Blogger Awards!

The blogging world often gives out awards, as a means of mutual encouragement and support, and I thought that ME, CFS and FMS bloggers deserved an award of their very own.  

So I've gone right on ahead and created an image for an award and launched the idea. 

I  hope that the comments section of this post will also act as a collating area for inspirational blogs...

In my next post, I will send out my first awards, and I hope those bloggers will continue to pay the compliment forwards.  I am looking forward to finding out what other bloggers have to say on their blogs.

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

ME & CFS & FMS BLOGGER AWARDS:

Awarded by bloggers, to other bloggers, to acknowledge outstanding endeavour in promoting awareness of Myalgic Enchephalomylitis (ME), Chronic Fatigue Syndrome (CFS)  and/or Fibromyalgia (FMS). 

The blogs receiving the awards do not need to be dedicated solely to ME, CFS or FMS, but they should contain at least one post that has helped to increase awareness.  

It is hoped that these Awards will increase blog readerships and also encourage networking between ME & CFS & FMS bloggers themselves.  No matter the title of our diagnosis, patients of these conditions all suffer from a frustrating state of health that is poorly recognised by most of society.

HOW IT WORKS:

1,   On receiving the ME & CFS & FMS BLOGGER AWARD, you should be directed to a post that describes why you (and others) have been given this award.  The page will also include this set of instructions and the two award images.

2. Please note, you do not need accept the award.  The aim of the awards is about recognition and a bit of fun, NOT extra work! Please do not feel pressured to participate.  

3. To claim your award:

a) Create a new post on your blog, in which you thank the individual who gave you the award  (remember to include a link back to their blog).  You can then copy the images to your blog post and/or side bar as you wish.

You may need to click on the image and download it, before putting it into your own post.

Below is the code for adding the small image as a link in your blog side bar if you wish to do so:  

<a href="
http://sallyjustme.blogspot.com/2014/02/launching-me-cfs-fms-blogger-awards.html
" target="blank">
<img src="http://i68.photobucket.com/albums/i4/salpublicphotos/BloggerBadge_zps26d28ded.png"/>
</a>

b) List three to ten blogs that you would like to recommend, giving a brief description of why you think each one is special.  A couple of lines is fine, but be sure to include a link to each blog you name (or specific page if you prefer) so that others are encouraged to visit.

c) Copy and paste these instructions into your post. Copy from the first *** above, to the last *** below to ensure that every thing is included. (Add the images separately if they don't copy automatically. Control-Shift-V also removes crazy formatting during pasting if that is a problem. ;) )

d) Alert your chosen blog owners to their awards by making a comment on the most recent post of their blogs.  The comment could simply read: 

"Congratulations, I have nominated your blog to receive an ME & CFS & FMS BLOGGER AWARD.  Please visit <insert link to the post you have just created> to collect your Award"

3. Hopefully these awards will spread far and wide.  I would love to keep track of where the awards end up, so I would be very grateful if participants would also copy their list of awards into a comment beneath this post:
http://sallyjustme.blogspot.com/2014/02/launching-me-cfs-fms-blogger-awards.html.
I hope that collecting all the recommendations in one place will help each of us to find and explore new blogs.

THANK YOU ALL FOR PARTICIPATING.

Sally
http://sallyjustme.blogspot.co.uk/ 

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

Blogging, FaceBook & Twitter: Campaigning ME

Next month it will be two years since I came down with ME, and still sometimes I wake up expecting to just go and DO all those things I used to do. I can't. So I've had to find other outlets.

To be honest, the computer is now a big feature in my life.

In the first months it was a research tool, and Googling "chronic fatigue" quickly brought me to an ME forum and the advice that protected me from doing massive exercise-induced damage to my health.  There, I learned about good pacing techniques and how important it was to avoid that dreaded Graded Exercise Therapy. 

Next I found Facebook and an amazing network of ME Groups.  Some of these are very much of the coffee 'n' chat variety, whilst others have a strict focus on a particular campaign.  Some are "open" with posts visible to all comers, others are "closed", or "secret".

Facebook has become an incredible means of spreading the word about campaigns, petitions and events. It is remarkably easy to "share" posts across groups and to individual walls so that a message gets quickly promoted for almost instant results.   Indeed the recent demonstration at Stormont (see this post) was able to gather a huge number of letters of support within a few short days, simply due to the networking ability of Facebook groups and individuals.

Twitter took a bit more getting used to for me! It limits posters to very short statements.  However the addition of tags, links and the ability to "retweet" makes it an incredibly fast means of information sharing.  Some tweets can almost go viral, but most are transient.  Yet using links to more permanent internet places, can make Twitter very powerful and retweeting can take the message far beyond the reach of the original poster.

The petition campaigning for a second medical opinion for ME patient Karina Hansen made excellent use of both Twitter and Facebook.  Petition Link  Please take a look at this and consider signing and sharing. 

And finally Blogging!  I have had several blogging false starts.  The first two I set up at a time when I was fit and well and just far too busy "being out and about" to keep a blog up to date.  Believe me I have absolutely NO regrets about letting them slide into oblivion.  I now have three blogs that I post to periodically.  Blog posts stay permanently, and can therefore be a more permanent record.  It is a great way to "say something" and then to be able to point others to the message whenever appropriate.

For those of us with ME or other disabling illness, the internet can be a powerful way to instill some meaning into life.  I may not be as physically active as I would like, but having a voice, and collaborating with others via my screen and keyboard has become a powerful motivator for my life.

I look forward to hearing what others have to say!

In the mean time - here is a Wordle created from the words in this post! 

Dr Mark VanNess in Northern Ireland!

The last few days have been a whirlwind of excitement for the ME community in Northern Ireland.

Joan McParland of the Newry and Mourne ME and Fibromyalgia Support Group, invited Dr Mark VanNess (Associate Professor of University of the Pacific, and Workwell Foundation, USA) to Northern Ireland to explain his findings on Post Exertional Malaise (PEM) in ME.

Dr VanNess gave two presentations. The main event, in the Long Gallery in Stormont, was hosted by Dominic Bradley (MLA) on Tuesday 4th February.  This was well attended by both local politicians and front line medical professionals.

At the Stormont conference, Dr VanNess explained how the Workwell Foundation research clearly indicates that Graded Exercise programmes are harmful for ME patients.  This, is contrary to the current UK medical guidelines issued by NICE, which still encourage rehabilitation through gradually increasing exercise regimes.

Dr VanNess explained how his investigations compared ME patients to de-conditioned controls, using Cardio-Pulmonary Exercise Tests (CPET).  When performed on a single day CPET results show very little difference between the two groups, but when a repeat test is given on a second day, the ME patients fall dramatically behind.  He said this difference could potentially be used as a diagnostic biomarker for ME, because results are not dependent on the effort of the individual, and so cannot be faked.

Dr VanNess further explained that aerobic exercise is harmful to ME patients.  He admitted that it is not yet possible to say how the aerobic process fails to increase during exercise, but the fact that it does means that ME patients need to avoid over exertion.  Indeed he recommended that patients use a heart rate monitor, so that activities could be kept below this aerobic exercise level.  As a ball park figure he suggested keeping heart rate below 110 bpm at all times, although the critical number could be different for each patient.

Dr VanNess speaking at Stormont

Dr VanNess's presentation was very well received and the question and answer session opened up many issues for debate, including how the current situation for ME patients the UK is less than ideal.

Other speakers at Stormont included:

• Mr Dominic Bradley MLA, who hosted the event and welcomed everybody to the conference.
• Joan McParland of Newry and Mourne ME and Fibromyalgia Support Group, who gave a strong statement from a patient's perspective and called for urgent changes to be made to the medical approach to ME, including better medical student education.  She strongly urged the acceptance of the Canadian Consensus Criteria for diagnosing ME as a priority.
• Martina Marks, who presented a cheque for £1000 to ME Research UK and spoke about the work of the Newry and Mourne ME and Fibromyalgia Support Group.  She also thanked the many people who had helped make the event happen.
• Mr Horace Reid, an ME patient and advocate, spoke about the existing position regarding the services for ME patients in Northern Ireland - or indeed the lack of them - and pushed for change.
• Dr William Weir, who explained some of the controversy surrounding the name ME and the overlap with the condition Fibromyalgia. He talked about misguided exercise advice and the problems patients face getting a diagnosis.
• Dr Vance Spence, from ME Research UK, who spoke about current knowledge regarding ME. He emphasised that symptoms are serious, and that children can also suffer. He also made the point that psychiatry is not the answer!

Coinciding with the Stormont conference, a number of ME patients staged a silent demonstration on the steps of Stormont, asking for specialist ME services to be provided for Northern Ireland where none currently exist. They made the point that a "fatigue clinic" offering Graded Exercise and Cognitive Behaviour Therapies, such as have been set up in other parts of the UK, would not be welcomed for Northern Ireland.

The demonstration was made even more poignant by a huge banner, with pictures of the many severe ME patients in N.Ireland.  In addition a folder of supporting emails from UK patients was handed to Jim Wells MLA and Deputy Chair of the Assembly Committee for Health. This folder was compiled by Clare Palmer in the days before the event.

 Dr VanNess also spoke to patients in Newry on Sunday 2nd February.  This presentation was aimed at helping patients and carers to understand the implications of his research in managing the restrictions of ME.  He used the analogy of a credit card to explain how ME patients are slammed with huge interest rates when they exceed their low income energy budgets.  He explained that keeping exertion levels to a minimum could help ME patients to avoid the high interest penalties (often called a "crash") and so get the most from their limited energies.

Both events were well attended, and patients and organisers alike were delighted to have their illness taken seriously, and to finally have their "exercise makes me worse" experience validated by research results.

Newry and Mourne ME/FMS Support Group would like to thank Dr VanNess for making the trip from California to speak here in Northern Ireland, and for helping us all to better understand  ME. Perhaps there will be a run on heart rate monitor sales this week?

The demonstration outside Stormont. 

Both photos taken by Jeanette Marley of ME Support NI.