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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Living 5 minutes by 5 minutes

Messages
78
I've been bedridden for three weeks
A combination of PEM, POTs, plus inflamation, muscular fatigue, blood sugar all over the place and bad case of impaired thermoregulation.

I'm slowly recovering but suddenly, instead of doing nothing the whole day, enduring boredome and wasting time, I realized I can do a lot if I alternate some 5 minutes rest with some 5 minutes activity.

Nothing extreme.
For example I was getting tired of the stale air and wanted to breath some fresh air, so I opened the window and from the bedroom (which is close to the window) I took deep breathing of the cool air of the morning. Then I rested for another 5-6 minutes. But this time, thanks to the realization I had actually done something before, I was more relaxed and at east just resting and didn't feel much bored.

Then I listened to a song for 5 minutes. And again rested for 5-10.
Then I drunk a cup of tea, very slowly in order for the whole activity to take 5 minutes and I actually enjoyed the taste a lot more because of the slow pace.

I used 5 minutes to write down all the things I could do in those 5 minutes bits, things I have postponed for a long time like setting my HD, erasing old messages from my cell, sending that email.
I'm using 5 minutes to write this post. Then I will rest, in this way I won't spent too much consecutive time at the PC without resting the mind and the eyesa; I'm starting to think that even excessive consecutive computer us could lead to PEM.

When I won't be on bed anymore I will use this same pattern to walk 5 minutes around the house or have a footbath with crystal salts or cook a meal.

Sounds like this could work in both preventing boredome, PEM and a feeling of lacking accomplishments.

Any thought?
 

Nielk

Senior Member
Messages
6,970
I'm sorry river that you are bedbound, but it seems that you are handling very well.
You took this unfortunate state to make it an opportunity to do positive actions.
Good for you!!!
 
Messages
70
Location
Chelmsford, England
So sorry you have been this ill but you are doing exactly the right thing.

Have you seen the pacing video on Vimeo made by an English health board as it is a fantastic guide to the pacing concepts? It is called Setting The Pace http://www.vimeo.com/6826295. One of the people in the video was also bed bound, and by doing as you are has gained control over her life with the disease. I know how dreadful these symptoms are as I have all of those you mention and they often make me bed bound too.This video really helped me. Yes some of the people in it are better than I am, but the one person really was dreadfully sick and was an inpatient at a clinic in Romford which has a unit for seriously affected people where they teach them lifestyle management. You have it perfectly - 5 minutes of activity and 5 minutes of rest. Hope you feel a little better soon.xx
 
Messages
17
This sounds like a good idea. I have POTS and have been really struggling with it and with boredom. I have been thinking about this and I wonder if I push myself to do things for to long. Like I try the best I can and only to get to 20 maybe 30 minutes a couple times a day if I'm lucky and the rest of the day I"m driven insane with bored and get the wired but tired. i wonder if attempting to build endurance is causing me to release more adrenaline and if i stepped down to where I didn't push soo hard I'd have more "5 minutes" and not feel as wired? I'm going to give it a try.

Are you able to do that constantly through the day or jus tlike in the afternoon? Do you still need long periods of rest. I'd love to hear anything you have to say about it! When you exercise for small amounts do you need more rest than if you were drinking tea or something.
thanks for this gfeat tip!
 

*GG*

senior member
Messages
6,389
Location
Concord, NH
I'm sorry river that you are bedbound, but it seems that you are handling very well.
You took this unfortunate state to make it an opportunity to do positive actions.
Good for you!!!

I concur, reminds me of myself when I had a major flare up about a year ago. I quit drinking coffee, soda and started meditation and recenlty taken up gentle Yoga and started taking a quality fish oil, Vitamin D and LDN eating more Organic and probably other things i do not recall at the moment. I do much less unlike the past, and my pain is much improved from a year ago, actually tons better!