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Author Topic: Very strict pacing - a note of hope  (Read 2143 times)
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tandrsc
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« on: May 05, 2013, 01:08:13 PM »

I've had so much success with my very strict pacing that I wanted to post a little hope.

I've had this stupid illness for about 30 years, and the best I've been able to say about pacing in all that time is that it is necessary, but that all changed recently.

My pacing has always taken the form of trying to break down tasks into smaller chunks and dropping anything that didn't 'need' doing. Despite my best efforts I was still having 2 or 3 days a week when I wasn't able to do anything at all (not even get dressed). So 2 months ago I switched to a different form where I would do 10 minutes of activity followed by 5 minutes of relaxation. So that's a very strict 5 minute relaxation break, every 10 minutes, every day.

After 2 weeks this started to feel easy so I moved up to 12 minutes until that felt easy. I am now up to 20 minutes (increments were 10, 12, 15, 17, 20) and plan to move to 22 minutes next week.

Since doing this I have not had any crash days, I have been able to get showered and dressed every day, and I am now able to leave the house up to 3 times a week without any ill effects. None of these things have been possible for 3 years.

The relaxation technique I use is this one - http://forums.phoenixrising.me/index.php?threads/relaxation-technique-not-based-on-breathing.19928/

Most things can wait 5 minutes before resuming (I had a break in the middle of typing this), and even things like getting showered and dressed can be broken down this way. I did it by having a 5 minute break after the shower and a 5 minute break after slopping on the creams. I don't bother with a break in the middle of eating meals, but I definitely have a break after each meal.

The caveat of course is that I was well enough to even try this at all, but I can't believe it's taken me so long to even think of it.

Hopefully I've inspired someone   Wink
« Last Edit: May 05, 2013, 01:15:23 PM by tandrsc » Logged

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agapanthus
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« Reply #1 on: May 05, 2013, 03:00:48 PM »

Thank you for sharing that. To have had this condition for 30 yrs and to still be learning and sharing is v inspiring. To have made that much improvement via pacing when you were effectively bedbound on some days is really fantastic.

Although my own pacing is more lackadaisical (I am less severe than you) I have noticed that if I have brief rests that I feel able to do more. I wonder if it's something biochemical going on re the ATP to ADP energy release. I had Dr Myhill's mito test and I remember that there was even something on her notes that indicated that this might be true for me (ie that I could do things as long as I had short rests in between). I would need to look that one up to check it though......

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catbells4
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« Reply #2 on: May 08, 2013, 07:59:05 AM »

 s_hi and thanks for sharing, this is very inspiring and well done for being disciplined! Nice to hear some good news and I'm sorry you have suffered for so long. During your activity times have you still had to push yourself quite hard?
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tandrsc
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« Reply #3 on: May 08, 2013, 10:00:44 AM »

Fortunately, it doesn't take that much discipline when I know what the alternative is  smile

During your activity times have you still had to push yourself quite hard?

No, I would say that pushing hard is definitely something NOT do to. It's more a feeling of manageable. Once a level feels consistently easy rather than just manageable, I know it's time to increase the minutes.
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tandrsc
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« Reply #4 on: May 09, 2013, 09:33:37 AM »

I just wanted to add that my definition of actvity is very loose. Essentially it's anything that isn't lying on the sofa felling sorry for myself, so walking, reading or just having a cup of tea all count as activity.
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Keela Too
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« Reply #5 on: May 09, 2013, 11:40:24 AM »

Do you not find you use up more energy walking between the sofa and where your "activity" takes place...  I use a Fitbit to count steps and as a result find I stay in one spot for longer periods.  Yes I rest up, but not so frequently because it would use too many steps!
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tandrsc
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« Reply #6 on: May 09, 2013, 02:21:56 PM »

No, because I pace my activity by time not steps. It would not help me to pace by steps as sedentary activity such as reading is equally tiring for me. In fact, doing anything at all is tiring.

Also, I tend to do my 5 minutes relaxation wherever I happen to be, so if I'm sitting at the sewing machine, I'll just sit and do it there.

Besides, I live in a very small flat so it is only about 3 steps to go anywhere  smile
« Last Edit: May 09, 2013, 02:54:36 PM by tandrsc » Logged

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« Reply #7 on: May 09, 2013, 03:06:41 PM »

Okay - that makes more sense.  I used to go to bed for a nap - but we live in a cottage with a long corridor to our bedroom and so now I try to do that walk only once there & back in 24 hours!

Napping at the table makes more sense.

I probably should be more aware of what energy reading etc takes, but I don't find it too bad.... or if I'm tired at all it's a great way to suddenly find that I am asleep!  LOL

Sewing onthe other hand is quite draining.  And I really must be more strict with my computer usage!
 Huh?
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tandrsc
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« Reply #8 on: May 24, 2013, 09:06:18 AM »

Since I've been doing so well, I just wanted to post a wee update.

I'm now up to 30 minutes between rests without any trouble, and leaving the house no longer fills me with dread as I don't have to suffer an aftermath.
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catbells4
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« Reply #9 on: May 25, 2013, 06:45:21 PM »

 whoo that's great, nice to have some good news!  clap
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tandrsc
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« Reply #10 on: July 01, 2013, 07:30:59 PM »

I am up to an hour (a whole hour!) between 5 minute rests and no ill effects  celebrate

Next step is to try some sort of work - I thought a bit of office temping. I reckon if I disappear to the loo each hour for 5 mins no-one would notice.
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Sirius
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« Reply #11 on: March 05, 2014, 09:51:15 AM »

Thank you for these suggestions. I am going to give it a go. I see where I have been going so badly wrong. It is my nature to want to complete a task before relaxing, by which time it is probably too late!  Last night I was not even able to get upstairs to bed and lay berating myself on the settee.  Thank you for sharing......and relax....
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« Reply #12 on: March 05, 2014, 09:56:46 AM »

I forgot to add I use these one minute relaxations when I don't have long but need to take a short meaningful break.....there are whole lot of different headings at the top of the meditations. Some I like more than others and there is a selection for children. I used to have them on my phone for when I was out and about.
http://www.just-a-minute.org/resource_centre/
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tandrsc
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« Reply #13 on: March 05, 2014, 10:57:59 AM »

Thanks for the link - one minute meditations are an excellent idea.

My health took a bit of a dive when I tried working again. It was only office temping, but I went straight into 5 days a week and after 6 weeks I was dying (figuratively) - Doh! Fortunately, the people I was temping for were very sympathetic and let me go down to 1 day a week, then 2 days, I am now at 2.5 days a week and still hanging in there.

Disappearing to the loo each hour for a 5 minute relaxation break seems to work quite well.
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Sirius
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« Reply #14 on: March 05, 2014, 11:56:29 AM »

This gives me hope on one of my worst days ever. I have forgotten all the ways I coped when I was ill last time and this forum is reminding me. I hoped I would never be back in this situation having got to the point where I was running my own business and living a nearly normal life. Take care. Which is what I stopped doing :(
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