Examples of extreme pacing or ART

[Dr.Patient]

Hello, can you share some examples of extreme pacing or aggressive rest therapy that you practice, or practised at some point in your illness, thank you!

Looks like I am not pacing enough, I have fatigue symptoms 2 - 3 weeks a month, 3 years into my illness.

I'm going to start by saying that I'm going to use a power toothbrush from now on.

 

[waiting]

Hello, can you share some examples of extreme pacing or aggressive rest therapy that you practice, or practised at some point in your illness, thank you!

Looks like I am not pacing enough, I have fatigue symptoms 2 - 3 weeks a month, 3 years into my illness.

I'm going to start by saying that I'm going to use a power toothbrush from now on.

Try to lie down, in a quiet area, with an eye mask, and no TV or radio, for a minimum of 15 minutes/hour and a maximum of 45 minutes/ hour. Focus on your breathing -- deep, diaphragmatic breathing.

During this time, you can also try an easy form of meditation -- counting on your fingers -- thumb to each finger -- each exhalation is a count of 1. So, with your thumb to your forefinger, inhale slowly, exhale slowly. That's 1. Repeat for 2-10, then back down to 1, then move to the next finger. (This is said to increase the parasympathetic system -- to counter our overactive sympathetic nervous system).

And, sit instead of standing whenever you can. Lie down instead of sitting whenever you can (energy conservation).

 

[ahmo]

Have you seen this thread?
http://forums.phoenixrising.me/inde...ods-and-can-cfs-people-get-really-well.34385/

 

[Sushi]

When I get the very first symptom that I am overdoing, I stop and rest until that symptom resolves--however long that takes. The problem is each person probably has their own "early symptom warning."

Sushi

 

[Esther12]

Looks like I am not pacing enough, I have fatigue symptoms 2 - 3 weeks a month, 3 years into my illness.

Good luck with everything, but I'm afraid that there isn't any good evidence that any particular approach is curative, so I wouldn't take your current problems as evidence that you're doing anything wrong. If you find resting helpful, then do it, but I don't think that you should impose it upon yourself in the expectation that this will lead to you recovering.

 

[Dr.Patient]

Have you seen this thread?
http://forums.phoenixrising.me/inde...ods-and-can-cfs-people-get-really-well.34385/

It is a looong thread, but I will read it slowly, thanks.

 

[Dr.Patient]

Try to lie down, in a quiet area, with an eye mask, and no TV or radio, for a minimum of 15 minutes/hour and a maximum of 45 minutes/ hour. Focus on your breathing -- deep, diaphragmatic breathing.

During this time, you can also try an easy form of meditation -- counting on your fingers -- thumb to each finger -- each exhalation is a count of 1. So, with your thumb to your forefinger, inhale slowly, exhale slowly. That's 1. Repeat for 2-10, then back down to 1, then move to the next finger. (This is said to increase the parasympathetic system -- to counter our overactive sympathetic nervous system).

And, sit instead of standing whenever you can. Lie down instead of sitting whenever you can (energy conservation).

I like this sit and lie down things!

Also, I realized that I am mostly in my couch lying down.

 

[Dr.Patient]

Good luck with everything, but I'm afraid that there isn't any good evidence that any particular evidence that any particular approach is curative, so I wouldn't take your current problems as evidence that you're doing anything wrong. If you find resting helpful, then do it, but I don't think that you should impose it upon yourself in the expectation that this will lead to you recovering.

I'm hoping to get fatigue free days with doing not much activity other than resting at home. (Wishful thinking).

 

[justy]

Hi, I do have some al;most fatigue free days with ART at the moment. its really nice. of course I now am doing much less than I was, and my life has shirunk even further. as soon as I start to 'do' again it all comes back.

I spend most of the day in bed for the past few months and gradually feeling a little better - I do still go out on occasion but with my wheelchair.

I also did this about 5 years ago - I just gave in entirely and went to bed full time. this made me feel much worse at first, but gradually over a period of about 5 -6 months my health improved steadily. then I had two really not bad years, having improved from about 25/30% to about 40-50%, but then something happened last year - I don't really know what and went back to 25% for some time. Now stable at about 30% .

It can really help, but is a very long term strategy. I just decided recently that I don't want to feel so crap all the time, in pain and fluey and sevrerly fatigued so I went back to bed and it is lifting slowly - no where near ready to increase being out of bed time though and Im not resting as aggressively as I did 5 years ago. I hope this makes sense. its late here and im rambling and tired.

 

[ahmo]

It is a looong thread, but I will read it slowly, thanks.

The gist of it is at the beginning: very short intervals of activity interspersed with lying down, darkened space, doing nothing

 

[Sparrow]

Like Sushi, I try to stop everything at the first early warnings signs. I also try to avoid anything that's not easier than "somewhat difficult" for me on a particular day.

I treat my energy as a precious and limited resource, and try to avoid spending it on anything that isn't really worth it, or where it can be avoided (I have an electric toothbrush too, and I sit on the floor to use it).

I spend a lot of time lying down (e.g. to use my laptop, watch TV, etc.), and when I'm seated I have my legs tucked up rather than hanging down (sitting cross-legged, or with them to the side) because I've found that I last longer that way.

I've made the difficult decision not to accept visits from friends until I'm actually well enough to get through them without triggering a permanent backslide in functioning. This one has been painful.

All of this together has vastly improved the rate of my recovery, though. And my limits are still low, but my quality of life is much better (I can't do much at all, but I no longer feel so unwell so long as I don't overdo it). Best wishes with your quest for improvement.

 

[SOC]

Using a HR monitor to stay below my AT was the only way I managed not do overdo. It was shocking how little my body was actually capable of doing without exacerbating my symptoms. I simply wouldn't have believed it without the solid evidence of seeing my HR go crazy at the least little thing -- like walking across a room.

Pacing according to my AT forced ART on me. I spent the better part of several years either in bed or in a recliner with my feet up. Before that I thought I was pacing well because I had cut my activity way back -- to less than 50% of what I had been doing previously. That was not nearly enough. Once I stopped exceeding my AT almost constantly, some of my symptoms became less severe and I stopped getting worse and worse. My other treatments also worked better and faster. For example, my progress with Valcyte halted when I got over-eager and tried to increase my activity as soon as a felt a bit better. I went back to ART and improvement started up again.

Of course, pacing will not cure ME. If it did, few of us would be here. We'd be out dancing in the streets. It can, however, stop a decline and ease some symptoms, which can be a great relief. In my case, joint and muscle aches almost completely disappeared -- as long as I stayed under my AT. My condition became more stable. I had much less of those unpredictable variations which made it impossible to know what I'd be able to do from one day to the next. Flu-like symptoms, OTOH, were not affected by pacing.

 

[SDSue]

Using a HR monitor to stay below my AT was the only way I managed not do overdo. It was shocking how little my body was actually capable of doing without exacerbating my symptoms. I simply wouldn't have believed it without the solid evidence of seeing my HR go crazy at the least little thing -- like walking across a room.

On the surface, this seems like a stupid question, but here goes:

When it comes to HR monitoring, how good is "good enough"?

I cannot be perfect, so at least once a day, and often more, my HR exceeds my AT. I have learned to very quickly remedy the situation, but I wonder if that's good enough. Over time, I've lowered my guesstimated AT from 120 (yeah, I was clueless then lol) to 95, which has definitely reduced my crash frequency and duration.

What was your experience with this? How perfect were you and your daughter?

 

[SOC]

On the surface, this seems like a stupid question, but here goes:

When it comes to HR monitoring, how good is "good enough"?

I cannot be perfect, so at least once a day, and often more, my HR exceeds my AT. I have learned to very quickly remedy the situation, but I wonder if that's good enough. Over time, I've lowered my guesstimated AT from 120 (yeah, I was clueless then lol) to 95, which has definitely reduced my crash frequency and duration.

What was your experience with this? How perfect were you and your daughter?

I was more perfect than my daughter. I had to be because I was sicker and couldn't recover from overdoing as well as she could. I got so that I could go days, or even weeks without going over my AT, but I had some help around the house in those days. If you're doing all your own cooking and shopping, that may not be possible.

I had to develop a lot of strategies to stay under my AT. I walked around the house with that step-pause-step-pause bridal walk because anything faster put me over my AT within 10-15 steps. I only went up stairs once a day and had to sit for several minutes halfway and again at the top. I only showered a couple times a week and then sitting down. I couldn't towel off without going over my AT, so I got a giant terry bathrobe to wrap myself in and crawled into bed immediately after the shower -- another necessity since once I showered, I couldn't do anything else that day without going over my AT.

What I used to do standing, I started doing sitting -- cooking, dressing, showering, etc. What I used to do sitting upright, I started doing with my feet up -- paperwork, reading, watching tv, eating meals.

If my alarm (set below my AT) went off, I sat down right where I was -- stairs, middle of the floor, whatever -- and waited until my HR was back to normal. Not everyone has to do that, of course. I just found that once my HR started climbing, it shot up rapidly and stayed up unless I took fairly extreme measures.

For me, spending more than 10-20 secs above my measured AT would result in some degree of PEM. I learned to stay below that no matter what. To accomplish that, I ended up setting my alarm 10-20 bpm below my measured AT and stayed below that number. I found it wasn't just a question of not going over my AT. It was also about not spending a lot of time near my AT.

I thouoght about it like this -- the average healthy person doesn't walk around all day with their HR at 180-190 bpm. Working up near your AT is an exceptional situation even for a healthy person. They do it during heavy exercise, not routinely. So why should we PWME be trying to function near our AT all day? Being near our AT should be reserved for the limit of our activity and done infrequently and only when necessary. For me, that was taking a shower or getting back upstairs to my bed. Otherwise, my goal was to stay far below my AT for routine activities, which is what a healthy person does. My sister doesn't jog in place the whole time she's cooking dinner, do jumping jacks at her desk, or run full-speed through the grocery store. Why should I ask my body to to the equivalent?

Yeah, my house got dirty and I had to break up my meal prep into many 5 minute increments throughout the day. But I got better, so it was worth it.

 

[SDSue]

Thanks, @SOC for the detailed explanation. What' you've laid out is very similar to what I'm doing. You've given me hope.

Leaving any task half done isn't my nature, but I'm learning (the hard way lol).

 

[SOC]

Thanks, @SOC for the detailed explanation. What' you've laid out is very similar to what I'm doing. You've given me hope.

Leaving any task half done isn't my nature, but I'm learning (the hard way lol).

I was reminded during that stage of my illness of a story my wonderful former GP told me. She had been very ill, and like us, not good at leaving things undone. Her doctor ordered her to stop doing housework. She said it was so difficult that she often found herself sitting the middle of the kitchen floor crying because she wanted so badly to get her chores done, but knew she shouldn't.

I felt like that a lot myself. It drove me absolutely nuts to do my chores in 2-5 minute increments with rests between. Or not do them at all and let the house get filthy. I hated it. I couldn't get my brain around leaving jobs 90% undone. It was so NOT me. I found myself muttering many times a day, "Eyes on the prize. Eyes on the prize." Not that it helped, lol! I still hated every second.

 

[SDSue]

I felt like that a lot myself. It drove me absolutely nuts to do my chores in 2-5 minute increments with rests between. Or not do them at all and let the house get filthy. I hated it. I couldn't get my brain around leaving jobs 90% undone. It was so NOT me. I found myself muttering many times a day, "Eyes on the prize. Eyes on the prize." Not that it helped, lol! I still hated every second.

Eyes on the prize, indeed!

 

[Valentijn]

To accomplish that, I ended up setting my alarm 10-20 bpm below my measured AT and stayed below that number. I found it wasn't just a question of not going over my AT. It was also about not spending a lot of time near my AT.

That's what I do as well. My wrist unit lets me set two high and low alarms, so my high ones are at 100 and 110. By the time it alerts me to hitting 100, it's pretty inevitable that it will keep climbing to 110. If I stop what I'm doing at 100, then it at least won't go past 110, or not so much.

I also do the 5 minute food prep routine - and sometimes in shorter chunks. It also makes a big difference in how I shower, since heart rate tends to get pretty high even sitting on a shower stool. The heat + the scrubbing send it up pretty easily, so it's very easy to underestimate how often you need to rest for a minute or two during the shower.

 

[Dr.Patient]

="Valentijn, post: It also makes a big difference in how I shower, since heart rate tends to get pretty high even sitting on a shower stool. The heat + the scrubbing send it up pretty easily, so it's very easy to underestimate how often you need to rest for a minute or two during the shower.

Thank you for that!

My latest 4 week slump, haven't had this long a slump in more than a year, I attribute to taking 6 full showers last month. ( After feeling icky for taking half showers for more than a year).

I felt normal during and after the showers. I took them standing up. But then, the cumulative effect hit me the following month!

Now I am sitting intermittently on a chair during the shower (certain parts are hard to clean sitting down, for those I stand up, for all other parts, sitting down).

I have to learn to scrub slowly. Not normally.

No more than once a week shower.

After wiping off, sit down for a few minutes.

Any other shower ideas, anybody?

 

[Dr.Patient]

Here's what I came up with- as far as pacing:

I have a lifetime energy savings bank. Any activity is going to deduct from this account. The "default" position- lying down, eyes closed, quiet area, calm mind- is going to add money to my account. Any activity other than the default position is going to deduct money regardless of whether I feel any symptoms or not, either during, or a week later.