How To Pace?

[Empty]

I am creating this space for pacing ideas and suggestions.

What has NEVER worked for me is a regimented timetable and I suspect this is due to delayed PEM and the fluctuating nature. I tried many times to slowly build up and it just doesn't work this way.

I also found the 50% rule unhelpful. The idea that if I felt well enough to do something, to hold back in case it was causing the flare ups of symptoms afterwards didn't work for me at all.

I feel those times when I have more energy, I will either do two things:

1) I will use it to do and this prevents deconditioning. Even if it means a few days of rest afterwards. I feel if I need a few days of rest afterwards I have done nothing wrong and everything right.

Or

2)I will sometimes consciously sleep. This activates a deeper healing/repair mode.

I do sometimes a mix of 1 & 2.

 

[tandrsc]

I sympathise, I found myself in much the same situation and watched my health slowly decline over the years.

The thing that worked for me in the end was a very strict 5 minutes of relaxation every 10 minutes, regardless of what I was doing. I slowly built this up and now I do 5 minutes of relaxation every hour. This seems to work for me.

The idea is that I never reach a level of exertion that might cause me trouble - and I do everything slowly (no rushing around).

It isn't always possible if I need to leave the house, but I'll take a few days rest (like you) if I have had to do more.

Here's a bit more detail:
http://forum.chronicfatiguesyndrome.me.uk/index.php/topic,16211.0.html

 

[Empty]

Thanks so much for your input. It is a disease of contradictions, so I sometimes am helped by this type of format.

Are you able to work more now since ur last post on that thread?

I think I will get an ebike this year and see how I do on that as a better pacing exercise. Could never get to cycling every day consistently. No matter what pacing techniques I used.

I crashed after trying these spirulina/algae balls after feeling really good on them. High in iodine. But it doesn't last long anymore. A day or two.

 

[bobby]

What has NEVER worked for me is a regimented timetable and I suspect this is due to delayed PEM and the fluctuating nature. I tried many times to slowly build up and it just doesn't work this way.

Same for me - forced rest doesn't work. This disease fluctuates, so our exertion should fluctuate with it. I feel like our recovery reflex (cause that's what it is, an automatic reflex of the body after exertion) is broken.

That is why the rigid 15min. exertion / 15min. rest protocol doesn't work. There are so many factors to take into account that it is impossible to know how our bodies will react to exertion. (And I'm not even talking about building up, cause for most of us that is just a distant illusion.)

I have an ebike which helps for transportation (to doctors etc). I never use it for 'exercise', cause I get nothing out of it. Just exhaustion. If you do want to try exercising, I'd say get a stationary bike. Cause outside there's wind, rain, heat, noise, traffic etc. which all adds up to the exertion.

The idea is that I never reach a level of exertion that might cause me trouble - and I do everything slowly (no rushing around).

same here. this has kept me pretty stable. I guess it's a matter of truly accepting your stamina for what it is: practically non existing.

 

[tandrsc]

Ooh - cycling - way beyond me

I managed to get back to work 2.5 days a week - but it was my undoing. I limped along for 2 years but had to give it up at the end of November last year. I think I got stressed and stress is my biggest killer.

I recently bought a UVB vitamin D lamp (I'm following the instructions) and I'm beginning to see glimpses of improvement. I need to say that I do several other things and together they make a significant difference.

1. A long list of herbals - http://www.healthrising.org/blog/20...oach-to-chronic-fatigue-syndrome-that-worked/
It was this list that got me to the point where I could pace at all.

2. Vagus nerve stimulation for 30 mins, 4 times a day - http://www.healthrising.org/forums/...gus-nerve-stimulation-of-ear.2653/#post-10082

3. A vegan diet (but I eat eggs/dairy if I eat out). Whole grains every day; pulses every day; nuts/seeds every day; at least 7 different fruit and veg every day; and nori sprinkle every day for iodine.

4. Lots of B12

For me it's about finding lots of things that help a bit, which added together help a lot.