Tuesday, 30 September 2014

Aviva Community Fund Voting has started!!

The Aviva Community Fund offers up funding each year based on the results of 3 rounds of online voting.

The first round has started and everyone can vote.  Each voter gets a single vote per day - but if you remember to return EVERY day between 29th Sept and 13th October (Canadian times) then you can give all your votes to the same cause.

I would like to encourage everyone to vote for the

"The NATIONAL ME/FM ACTION NETWORK is a Canadian charitable organization dedicated to Myalgic Encephalomyelitis (ME), also known as Chronic Fatigue Syndrome (ME/CFS) and Fibromyalgia (FM) through support, advocacy, education and research."

Their page on the Aviva site is here.  

I have also placed a badge at the top of the side bar on this blog.  It will stay there for the duration of this series of voting rounds.

Badges and Banners for this cause can be found here (scroll down):

Hopefully a determined effort by the ME community and all their friends can pull off a massive level of support so that we can win some much needed research funding.



Other places where you can keep updated about this campaign:

Or if anyone wants a daily email reminder, they can send their email to office@mefmaction.com.

Monday, 29 September 2014

30 Things - Invisible Illness Awareness.

I came across this idea on Invisible Illness and thought it worth ten minutes to complete. Other posts for this are listed on the link, along with instructions on doing your own "30 things". 

30 Things About My Invisible Illness You May Not Know

1. The illness I live with is: Myalgic Encephalomyelitis

2. I was diagnosed with it in the year: 2013

3. But I had symptoms since: 2012

4. The biggest adjustment I’ve had to make is: Doing so much less.

5. Most people assume: I'm just "tired"!

6. The hardest part about mornings are: Not going out.

7. My favorite medical TV show is: Don't have one.

8. A gadget I couldn’t live without is: Computer

9. The hardest part about nights are: Needing to pee....

10. Each day I take _8_ pills & vitamins. (No comments, please)

11. Regarding alternative treatments I: enjoy drinking kefir.

12. If I had to choose between an invisible illness or visible I would choose: Jury's out.

13. Regarding working and career: Had to give up teaching job.

14. People would be surprised to know: I am still "happy"!

15. The hardest thing to accept about my new reality has been: Less spontaneity

16. Something I never thought I could do with my illness that I did was: Dog Agility from a mobility scooter!

17. The commercials about my illness: don't exist

18. Something I really miss doing since I was diagnosed is: Gardening

19. It was really hard to have to give up: Being physically active.

20. A new hobby I have taken up since my diagnosis is: Blogging

21. If I could have one day of feeling normal again I would: Walk along a stormy beach.

22. My illness has taught me: How to enjoy my own company.

23. Want to know a secret? One thing people say that gets under my skin is: "Are you tired?"

24. But I love it when people: talk about normal stuff - and dogs. ;-)

25. My favorite motto, scripture, quote that gets me through tough times is: One day at a time.

26. When someone is diagnosed I’d like to tell them: Rest is important.

27. Something that has surprised me about living with an illness is: We cope.

28. The nicest thing someone did for me when I wasn’t feeling well was: Hubby bought me an all terrain mobility scooter.

29. I’m involved with Invisible Illness Week because: we matter.

30. The fact that you read this list makes me feel: you care.

So there it is. That's a quick round up of stuff about me. Has anyone else done one of these?

Friday, 26 September 2014

Monitoring ME: Fitbit

Working out what I CAN do without illness repercussions is important to me, because  I want to be able to continue to do some of the things I love!

My main tools for measuring my daily activities are a Fitbit and a Heart Rate Monitor. The Fitbit gives me a good idea of how much I've been active, and the Heart Rate Monitor gives me an idea of the intensity of my activities.

My main aim is to avoid PEM (Post Exertional Malaise) because that can lead to long-term losses in my ability.  In this post I'll explain how I use my Fitbit, and in another I'll describe my tactics for using a heart rate monitor.

My Fitbit

I've been using a Fitbit One since November 2012.  It measures my daily steps, my active time, and also gives me an idea of my daily calorie burn. Here's a screen shot from my profile page today.  (There is also a feature for recording sleep but I've stopped using it.)

One of my aims with this, is to always walk slowly enough that the orange "fairly active" line (in the time active graph) stays close to zero.  At first this was incredibly difficult, but over time I've become better at taking things slowly. Obviously the red "very active" line never wavers upwards!

I have also created an Excel spreadsheet into which I enter my daily steps.  & I've set it up to produce some pretty graphs.  :-)

Anyway, I've decided to be brave, and share some of this personal data, in the hope that it will help others to understand.  So this is a scatter graph of  all my daily steps since I began recording almost 2 years ago.

I became ill with ME 8 months prior to the start of this graph, and the most recent dip down was due to a virus at the beginning of the summer.  Other dips, I suspect, were related to my attempts to do things two or three days in a row.

My Excel sheet also does some rolling averages:  I tend to watch my 5 day rolling average (yellow line in chart below) quite carefully.  If I see it creeping up, then I try to take a quieter day or two.  Often it is not the single day up that is a problem, but rather when I do slightly more for several days in a row.

The most dangerous time is when I "feel better" for a few days.  It is also when it is most difficult to pull back!  The drop in this chart however, was that summer virus I mentioned earlier!

Blue columns - daily steps
Yellow line - 5 day rolling average
Red line - 30 day rolling average
Purple line - 100 day rolling average

The red and purple lines, are 30 and 100 day rolling averages, and they give me a clear idea of where my activity level currently lies.  I aim to be consistent from day to day, but it's not easy.  A low step count like this means using a mobility scooter beyond the house, and also restricting what I do inside.

I also try to make a note of other activities that add to my daily exertion levels, such as going out to a coffee shop, or to agility training with my pup.  I write these down beside the raw data (and rolling averages) for each day, with the idea that I can check back for patterns.

I'm not very good at recording subjective data about how I feel.  I did try for a while, but no grading system seemed to work for me.  To be honest, I think that steps are a fairly clear indication of how well I am anyway: I don't do fewer steps without good reason.

Looking forwards: Although that scatter graph above looks depressing, I think it is clear that I have at least managed to halt the early relapses that were probably caused by trying to do too much.  (However, I regard that summer virus, as bad luck not bad management.)

I've no doubt my Fitbit helps me to moderate my daily activities in such a way as to minimise the chances of further relapses.  In this way I believe I am giving myself the best chance of recovery, whilst still managing to do some stuff I enjoy.  However the Fitbit doesn't really help me manage activities "in the moment".  For that I use a heart rat monitor.

Edit to include post on HR monitoring: Starting Heart Rate Monitoring for ME


PS If anyone would like a copy of the Excel spreadsheet that I have created, please let me know and I can email it out for your personal use. I can be contacted at:  keelatoo@ live. co. uk  (omitting the spaces ;) )

Saturday, 20 September 2014

Pacing and Unpredictable Events.

I was thinking about days when I go "out" and how, some events are more difficult to cope with than others.  I now find a heart rate monitor is useful for helping me to cope with the unpredictability of events.

So my illness level means that I can leave home about 2, or maybe 3, times a week, but not really two days in a row, and generally only for a limited time.  I also rest up a lot on a recliner seat in between times...

Anyway things that are regular, I can cope with as they are reasonably predictable.  For example doing agility training with my dog - I now follow a routine for getting out that keeps my heart rate reasonably low, and this helps me cope.

The most difficult events are those "other" activities. Like last weekend, when the dog club decided to have a party in one of the club members' houses. It was partly a fundraiser for a local shelter, and partly a going away party for my daughter, Shona, heading to Uni.

There were 3 things I really wanted to do that weekend - I chose JUST the party. And it was a great night out!

I was out of the house for 4 hours, and stayed within my step count for the day. My HR was slightly high for most of the evening - probably because of noise levels and the room being warm. I was seated & I felt fine at the time.

Some of my "wee signs" were there 2 days later, so I had obviously been a bit affected by the outing.

However, I think the HR monitor helped, because when I checked it, I could see my HR gradually rising over the evening, and this fact prompted me to suggest we head home at a time well before any symptoms would have suggested problems.

It is for these irregular events that the HR monitor is so useful. That and using it day in, day out, and being aware of my normal patterns, so that I can see when something changes.

Of course, useful as it is, it can only help if I have the self-discipline to take heed of what the monitor tells me!  And sometimes I feel that stopping at the right time, is as difficult as telling a toddler to leave half their bag of sweeties for another day!

Your thoughts?


Things that bring my HR up listed here. A few notes on using a HR Monitor for pacing
Gadgets I use to measure HR here: Rhythm+ and Endomondo: HR monitoring for ME

Thursday, 11 September 2014

"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?


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!


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

Wednesday, 3 September 2014

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

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. 

Invest in ME

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!