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Physical Fridays: “Increase by 10%”

28 Feb 14
Megan
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Pacing…

It’s the main thing that I need to be able to do properly to have a reasonable lifestyle with these illnesses.

Its also the main thing I still haven’t quite got right…

I think I’ve told you before that my doctor has asked me to increase my exercise at 10% each week (Graduated Exercise Therapy) and this has been going well.

I’m up to being able to walk about 30 minutes or ride about 10 minutes a day. Obviously I’m listening to my body and don’t exercise on days when I’m really bad because I don’t want to crash.

The problem is that, although my exercise is going well, the overall pacing isn’t working too well. I either do too much during the week and crash all weekend or the opposite, too much on the weekend then crashing during the week.

Over the next month this struggle with pacing is going to be even worse! The Foggy Frog Kickstarter campaign starts this Sunday (only 2 days away) and then we have just 27 days to raise the $7,500AUS (approx $6,000US) to finish the drawings and publish and distribute the picture book to those that need it. On top of that I’m hoping to attempt a very part time return to work as soon as I can get my doctor to agree (going to talk with him next Wednesday) and I’ve now got appointments with a Physio, an Exercise Physiologist, and a Naturopath next week!

I think in the long term my best bet is to use the same technique for all activities as I’m doing for the exercise (raising by 10% each week) but in the short term I’m just going to focus on taking very regular rest breaks, ensure I do a good combination of rest and activity, and finding a balance between all the different aspects of my life.

One Final Note:

As I mentioned, the Kickstarter campaign begins in 2 days. We’re hoping to launch with a bang and spread the message that we want our stories heard. We’re doing this through our Thunderclap and we’ve almost reached the minimum number of people needed for it to go out (we only need one more person to join us)!

So please, if you’re on Facebook or Twitter, join our Thunderclap. Click here and choose “Support with Facebook” or “Support with Twitter” and you’ll be joining us in reaching out to over 85,000 people on Sunday afternoon (Saturday night in the US) and letting them know that we deserve to have our stories heard too!

Do you think the 10% increase rule is a good way to go?

How do you find balance in your life?

No Comments

  1. jcerrone February 28, 2014 at 2:59 pm

    I think it’s a great idea to increase by 10%. I feel like I’m like you- do too much or too little. My biggest problem with physical activity is that I’m on crutches so my best bets are either the swimming pool or yoga. Sometime’s I have motivation issues GETTING to the gym to go to the pool or getting my mat out to start my yoga practice. aye! I need to just schedule times in my day and STICK TO IT!

    • Megan S February 28, 2014 at 3:00 pm

      I know how you feel! I struggle with getting what I need but I’m getting better.

  2. Deborah February 28, 2014 at 3:09 pm

    Pacing is difficult under the best of circumstances. But then there are times when the schedule serves up things that challenge the best of intentions. I am in the middle of two weeks of insanity. I’m trying to pace myself, but to a large degree it’s out of my control. I can look forward to when these two projects are over. In the meantime, I’m with you–regular breaks a focus on balance. Best of luck to you.

    • Megan S February 28, 2014 at 3:13 pm

      Thanks Deborah, I’m hoping to get through this next month without crashing. I would hope to see improvement but I want to be realistic.

  3. positivepain February 28, 2014 at 3:12 pm

    Pacing is the part I can never get right!

    • Megan S February 28, 2014 at 3:14 pm

      It does seem to be a struggle 😉

  4. Trisha February 28, 2014 at 3:21 pm

    Pacing is such a hard thing to implement. I struggle with it almost every day. I’m glad to hear that your 10% increase in exercise is going well. That seems like a very good sign for your recovery.

    • Megan S February 28, 2014 at 3:23 pm

      Thanks Trisha!

  5. Jenn M February 28, 2014 at 10:11 pm

    I think increasing by 10% is a good idea. I’ve been practicing with pacing too. I try not to give into the “push/crash” cycle (which is doing too much and then paying the consequences afterwards), but we all make mistakes. 😉

    • Megan S March 1, 2014 at 7:05 am

      So true, mistakes are part of being human and are a good thing as long as we actually learn from them and don’t keep repeating the same ones. :-/

  6. Just Another F-Bomb February 28, 2014 at 10:18 pm

    I do think graduated increases in activity are helpful. The hard part is limiting the increases. We have a tendency to do “just a little bit more” on days that we’re feeling good and then pay for it later. Balance is hard but it is possible. 🙂

    • Megan S March 1, 2014 at 7:04 am

      That’s great to know… I’ll just keep working on it and trying not to push that little bit further too often 😀

  7. branchingmama March 1, 2014 at 12:02 am

    Seeing as Im lying in bed following a crash, I have to agree that Pacing is very hard!
    I just started going to the gym and I think the 10% rule is a great one. Gonna use that in the Gym from now on.
    Pacing is really about building stamina up so we stop the push through/crash scenario. So applying the 10% rule to everything is a good idea. That said, the universe likes to have a good laugh at our plans and throw in all sorts of obstacles, like appointments, to keep us on our toes. At those times, schedule in your rest breaks and take them, even if you don’t feel too bad. Just remember, the rests when you feel ok will keep you doing ok.
    Now, if I only I could follow my own advice

    • Megan S March 1, 2014 at 7:03 am

      Thanks for the great advice. I know what you mean about having trouble following your own advice.

  8. CoCoJo March 1, 2014 at 12:23 am

    You definitely have a lot going on! Good luck with it all. The 10% rule would work for me if I ever started to begin with. :-/ Please take care and do rest when you can. I’m surprised at how easily I overdid it recently. Have a great weekend!

    • CoCoJo March 1, 2014 at 12:25 am

      Hahaha look at my pic! No idea how that happened unless the face I made with symbols changed into that! It’s perfect to be honest!!!

      • Megan S March 1, 2014 at 7:01 am

        🙂

    • Megan S March 1, 2014 at 7:02 am

      Thank you CoCoJo, I will definitely be resting at every opportunity. 🙂

  9. Fr. Eddie Tatro † March 1, 2014 at 4:15 am

    I know I had the hardest time this morning on my constitutional by the time I got back from it my entire body was burning. :

    • Megan S March 1, 2014 at 7:00 am

      So sorry to hear that Eddie! I hope you don’t feel bad for too long. It’s something we all need to work on I think, balancing our lives right.

  10. Emma March 1, 2014 at 5:43 am

    How are you finding the GET? I have read online very contradictory ideas that either it helps or it leads to an awful crash :(.
    http://emmamecfs.blogspot.co.uk

    • Megan S March 1, 2014 at 6:58 am

      Thank you for asking. I wouldn’t really call what I’m actually doing GET, although it is what my doctor recommended. If I’m not feeling up to doing the exercise I don’t, I listen to my body rather than push it too far.

      Saying that though, having a goal to improve each week gives me motivation to push my boundaries a little and helps me determine what my actual limits are so in that sense what has been recommended is helping.

      I’ve also read the articles that contradict each other and I’m happy to try everything once but only if I have the option to stop doing it if I feel it’s not being beneficial or it’s being detrimental.

  11. Nancy Blake March 1, 2014 at 12:53 pm

    The idea that exercise is in any way beneficial is so wrong – and a systematic increase is just folly. This illness is defined by the fact that muscular exertion MAKES IT WORSE. You all don’t even need to be told that, you know it from your own experience. You need to get through necessary, unavoidable activities. Then you need to do the things that give your life meaning. And above all, your body needs to have energy available to do whatever it needs to do for you to get better. That means you must conserve muscular exertion and make that an absolute rule of living. Go through your activities like a time and motion expert, learning how to do everything with the minimum of muscular exertion. And make sure that whenever you need to lie flat, for a few minutes, or a few hours or a few days, that you do it. Believe me, don’t pile extra exertion onto yourself with the idea that it will make you better, it will make you worse. Jason et al have recently published a study that showed that people who consistently did less activity than they felt they had the energy for had more energy and were able to do more, after several months. Resting is your weapon, energy-saving devices are your tools for moving towards recovery. Exercise benefits people whose aerobic metabolism is functioning normally, and if you’ve got ME, it just isn’t. I know it’s counter-intuitive, there is a huge cultural myth that exercise cures everything and has got to be good for you. If you’ve got ME, it just is not. If you need convincing, then keep pushing yourself – you will get worse, long-term worse. When that happens, consider a regime of rest, positive, healing rest, creative rest, aggressive rest – rest is your secret weapon, use it. Get a recliner, get a wheelchair (you can carry your stuff in it, and sit in it when you need to, it’s a tool, not a life sentence…quite the opposite. I did all this, and used a wheelchair until I didn’t need it any more. I am a psychotherapist, and I love working on my own issues as well as helping others. That’s how I know that ME isn’t a therapy issue, it just really is not. I got ME, lay around for three months and worked full time after that – because I got a job that was going to meetings and writing reports, so I spent days in bed organising meetings over the phone, learnt to use a PC lying on my back, insisted on having an executive chair in the office and a lawn recliner in every room in my house, wrote reports in the middle of the night because that’s when I was awake, made sure my head was always supported because if it wasn’t I couldn’t keep track of the meeting – I became ‘a caricature of a lazy person’ – and I am much, much better now because of it all. I’m now 78, and doing a Ph.D. on how on earth the psychiatrists get away with claiming ME belongs to them and that exercise will help us….

    • Megan S March 3, 2014 at 9:52 am

      Hi Nancy,

      Thank you for your input. I understand that you’ve found not exercising to be beneficial for you but what works for one person may not be the right thing for another person, especially when dealing with an illness that has such variability as ME.

      I believe the Jason et al. study that you are referring to is “The Impact of Energy Modulation on Physical Functioning and Fatigue Severity among Patients with ME/CFS” published in 2009 (please correct me if I am wrong). I have read this article and the main thing they infer is to remain within your ‘energy envelope’, in other words maintaining energy out at a slightly lower level than the available energy. As I mentioned, the way in which individuals are affected by ME/CFS varies and one individual may have ME/CFS but still have a higher level of available energy than another person.

      I feel it is irresponsible for anyone to say what is wrong or ‘folly’ for anyone else when they do not have a clear understanding of that individuals circumstances. Personally, I am attempting to make sure I remain within my available energy levels each day. However, I accept there will always be situations when life gets in the way and I need to go above my limits. This is why I remain comfortably below my upper level to give myself some flexibility. By increasing by 10% each week I am still working at determining what this upper level is. I would like to maintain as much of my muscle mass and strength as I possibly can while I recover.

      Again, thank you for your feedback and I do understand where you are coming from but we will have to agree to disagree on the point of exercise being ‘folly’ for everyone with ME/CFS. I do agree that each individual should assess their own circumstances and make the right choices for themselves but I do not agree that we need to label everyone with ME?CFS as being in the ‘DO NOT EXERCISE’ at all category.

      • Nancy Blake March 3, 2014 at 10:38 am

        Hi Megan – I really didn’t mean ‘don’t exercise at all’ – we all have to move around just to conduct our lives – but Ramsay and Acheson were unequivocal in saying that ‘complete rest’ in the early stages gave the best prognosis for recovery, and Ramsay cites three people who were so ill they came into hospital in a coma, and made a complete recovery (maybe these people didn’t have ME?). But I do think that the NICE Guideline which states that the goal of treatment is to ‘increase activity’ is wrong – the goal of treatment should be to improve chances of recovery, or movement towards recovery. ‘Increasing activity’ can defeat this purpose. I think that too many people with ME believe that ‘increasing activity’ should be the focus of what they are doing – but look at all the ones who point out that this does challenge their state of illness. I would suggest that it would be both safe and not cost any money, for sick people to experiment with making energy conservation their focus, and try out determined resting (Enlander, The Power of Rest, is a guide) for a while and just notice, over a period of a few weeks, whether that does have a positive effect on what they then become able to do. What I think we don’t need is to add ‘extra’ exercise to the efforts we have to put in just to manage normal living, and trying to have enough energy left over to create the possibility of the gradual improvement Jason reports on. Thanks for your thoughtful and comprehensive response!

        • Megan S March 3, 2014 at 10:53 am

          Thank you for your response Nancy. I agree that the goal of treatment is to improve the chances of recovery, not just increase activity. I have added additional activity into my daily life (after 6 months or so of complete rest) as I find it beneficial for my mental health. I believe that it is important to balance mental and physical health so that is what I’m aiming for.

          Thank you again for replying and clarifying what you meant.

          • Nancy Blake March 3, 2014 at 12:32 pm

            ..after six months of complete rest…that sounds marvellous. If only that were the routine response to a diagnosis of ME – a diagnosis made on the basis of an interview about the nature of the symptoms – if the constellation is muscle fatigue and post exertional fatigue, cognitive problems (short term memory, too tired to follow a plot or a line of reasoning), endocrine problems (disruption of body rhythms – appetite, sleep, body temperature regulation) and signs of immune activity (sore throats, swollen or sore lymph glands, ongoing low fever) – this would identify ME – too complicated for anyone to make up, and very recognisable. Following a period of complete rest, a gradual increase in activity makes perfect sense, and you are right about good mental health. You might be interested in my little article at http://www.nhsmanagers.net/guest-editorials/a-radical-care-pathway-for-mecfs
            which is on this theme.

          • Megan S March 3, 2014 at 12:35 pm

            That was before I was diagnosed as well! 🙂

  12. Cynthia March 1, 2014 at 1:30 pm

    I’m waiting to have a partial knee replacement so pacing will be in my future. I’ll keep an eye on your blog and perhaps take some of your ideas! Thank you.

    • Megan S March 3, 2014 at 9:54 am

      You’re welcome Cynthia, I’m glad to help others. 🙂

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  16. alternatives2014 May 19, 2016 at 5:38 pm

    Came across this today (19 May 2016) and would love to hear how everyone has got on since this was first posted. Hope to get some research going on the long term effects of an ‘increaseing exercise’ approach. I’ve made my views clear above, so success stories would be a valuable antidote to my rather extreme views!

    • Megan S May 23, 2016 at 11:21 am

      Thanks for getting in touch. I’ve had many ups and downs since then. The focus changed from GET to Pacing quite early on. When I can increase I only increase by 10% but I also decrease if I need to as well.

      At the moment I’m doing a short bike ride 3 days a week and maintaining a minimum step count of 4,000. Other than that it fluctuates a lot.

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