Aggressive Rest Therapy: My Experience

[JaimeS]

Doing this seemed to contribute to un-crashing me, so I am most pleased.

 

[Cheesus]

Interesting thread!

@Cheesus, what state were you in when you did this? Housebound? If you hadn't been doing the ART, how often would you have had to lain down and rested?

Did you have OI?

Yes, I was housebound. Getting out to go to medical appointments would take it out for me for days. I couldn't shower every day and I had to eat my meals in my room. I could spend a bit of time on my laptop and I also watched quite a lot of TV, but it was early on in the illness and I was still working out how to manage it so those activities would often make me feel really awful. It is difficult to say how often I would have to lie down and rest as most of my activity was not physical and it was quite a while ago. I was definitely in the severe camp at the time (and still am).

No, I did not have OI.

ETA: Actually, come to think of it, I may have had mild OI but only when I was in PEM, which was quite often. However when I had it assessed the doctor didn't think it was a stand-alone condition and I agreed (and still do).

 

[Sasha]

Thanks, @Cheesus - that's very helpful to know. I've been that bad but not for some time. A bit of a relief that I might not have to rest quite as much to get an effect! I'm planning to start tomorrow and maybe rest 10 mins per 30 mins at first, and see how that goes.

A few days ago I tried 15/30 and it was awful.

 

[Cheesus]

Thanks, @Cheesus - that's very helpful to know. I've been that bad but not for some time. A bit of a relief that I might not have to rest quite as much to get an effect! I'm planning to start tomorrow and maybe rest 10 mins per 30 mins at first, and see how that goes.

A few days ago I tried 15/30 and it was awful.

It is tough. I am having much more difficulty doing it now. I think when I was back at the beginning I had lots of motivation to try different therapies, but now everything seems to be so much more of a drag.

 

[slysaint]

I (very roughly) do 20mins activity, 20 mins rest (usually lying on the sofa, legs slightly elevated) throughout my 'activity time' 12-4. Obviously it depends on what I've been doing and how I slept the night before, and if my head is bad or not, and......and.........you know, the usual ME problems...

 

[Mij]

I think those of us with dysautonomia issues need to lie down for longer periods of time. I could take shorter rest periods during the first 10yrs of illness because it wasn't an issue for me back then, and I didn't experience PEM (or it was very mild back then).

 

[Strawberry]

I had forgotten completely about ART! I tried it when the original thread started (almost two years ago) and got enough energy to 1. Visit my dying brother in the hospital regularly 2. Help move my daughter into her dorm 3. Bury my brother 4. paint the interior of my new house 5. move into my house 6. keep up on cleaning and unpacking and cooking for myself daily.

Then I decided to prove that I didn't have CFS and hiked down to the beach (250 foot elevation drop, including 5 flights of stairs at the end), plus about 4 other weekends of severely over doing it immediately after the beach hike. I've had OI and been in a bad crash ever since.

Guess its time I re try this, and hope I can at least get rid of the OI issues! I would love to clean my house again. And cook dinner daily.

 

[Little Bluestem]

I find the boredom factor a big hurdle.

This is highly individual, but I am able to listen to music or the radio when I am resting. Alas, I cannot read.

 

[Sasha]

Glad you had such good results last time, and I'm sorry you had such tough circumstances, @Strawberry.

Do you mind me asking how long you'd been ill when you started ART and what you were able to do in an average day before you started (e.g. bedbound, housebound, able to self-care, cook, etc.)?

 

[Sasha]

Wondering if people have ARTed successfully by resting in small bits frequently or in huge chunks?

I tried the "small bits frequently" method yesterday (20 mins active, 10 mins rest) and never felt rested - and couldn't stick to it completely because you can't eat a meal in 20 mins. Wondering whether to go for some epic stints in the middle.

 

[taniaaust1]

Wondering if people have ARTed successfully by resting in small bits frequently or in huge chunks?

I tried the "small bits frequently" method yesterday (20 mins active, 10 mins rest) and never felt rested - and couldn't stick to it completely because you can't eat a meal in 20 mins. Wondering whether to go for some epic stints in the middle.

this rest thing takes time to work, you could need to be doing it for a couple of weeks before really starting to notice some improvement.

People that do ART, usually use longer resting periods (as well as may be using shorter ones through out the day too as is being done here), I see ART as being slightly different to this other thing which seems more about pacing rest and activity.

 

[Sasha]

this rest thing takes time to work, you could need to be doing it for a couple of weeks before really starting to notice some improvement.

People that do ART, usually use longer resting periods (as well as may be using shorter ones through out the day too), I see ART as being slightly different to this other thing which seems more about pacing rest and activity.

I'm certainly aiming to do it for longer than two weeks - I thought a month would be a fair trial.

In doing it in short bits, I'm not aiming to pace (in the sense of resting enough as the day goes on to compensate for what I just did) but to over-rest. I get bored lying down, so though that 10-min rests might be psychologically easier, and possibly also more efficient (in the sense that after an hour of activity, you maybe are compensating for more than three lots of twenty-minutes' worth of activity - some of these systems aren't linear).

 

[trishrhymes]

I've just been having a lovely little fantasy. What if the psychiatrists had decided aggressive rest therapy was their chosen treatment instead of graded exercise therapy. I wonder whether we'd all be now thanking them instead of (quite rightly) attempting to rip them apart.

If only!

 

[Sasha]

I've just been having a lovely little fantasy. What if the psychiatrists had decided aggressive rest therapy was their chosen treatment instead of graded exercise therapy. I wonder whether we'd all be now thanking them instead of (quite rightly) attempting to rip them apart.

If only!

Let's not go that route, @trishrhymes!

 

[Sasha]

I'm wondering now if rest is nonlinear, actually - whether an hour's solid rest is worth more than three lots of 20 minutes.

Those of you who've had success with this - what regime did you use? Long rests (hour or more), short rests (20 mins or less), or a mixture throughout the day?

 

[trishrhymes]

Let's not go that route, @trishrhymes!

You're right Sasha, I shouldn't be polluting a positive thread with mention of psychiatrists.

 

[TrixieStix]

I developed ME/CFS at some point in the past 3 and a half years (unsure of exact onset). I was already diagnosed with Fibromyalgia so I chalked the increase in symptoms to that until I took a sudden turn for the worse and developed symptoms and a severity not explained by Fibro. This turn for the worse happened in July of last year after I had my 3rd major surgery in less than 3 years. After the first major surgery in Oct of 2013 I developed a staph infection in my surgical site but after this last surgery I developed a severe life-threatening C. Difficile Colitis infection immediately afterwards which resulted in a 10 day ICU stay (very traumatic). I was treated with 3 weeks of Vacomycin (this is one if not the strongest antibiotics in the world) which thankfully worked and I have not had a C. Diff relapse.

Then this April 2 days after my wedding my body went completely haywire resulting in multiple ER visits, neurological visits, Neuro-Opthamologist, etc. I thought perhaps I was having my first MS episode but it is not MS and doctors ruled out all sorts of other things. We have settled on ME/CFS and after learning about it I realize it fits the symptoms I started experiencing these past few years but it just was much less severe before these 2 events so it was not obvious. Except in hindsight I now know I was having PEM the whole time but doctors failed to realize so even though I was describing text book PEM symptoms to them. And I also realize in hindsight that the severe month long episode after my wedding was a "flare", one so severe I shutter to think of it happening again.

I am now not quite 6 months out from my severe flare and my disease is now at the point where the smallest amounts of physical and cognitive exertion trigger PEM. I have a primary care doctor who is supportive and is in process of diagnosing me officially and documenting it properly, but he admits he doesn't really know what to do for me and I don't know what to do either.

Currently a normal day for me goes like this.... I go to sleep @ 8:00am and wakeup @ 6:00pm ish (I have developed Delayed Sleep Phase Disorder as a result of ME/CFS). I then move from the bed to my recliner chair where I watch tv or read. The activities I do on a "good day" are help with cooking dinner, walk around my yard a little bit, and of course using the bathroom. And once a week go to the grocery store (my spouse does all the driving) where I use an electric cart, and maybe once every 2 or 3 weeks I have dinner at a friends house in the neighborhood. I am currently only taking a full shower twice a month.

On a "bad day" or during PEM I sleep the same schedule and then move to my recliner chair. Only getting up to make a snack or use the bathroom.

So am I by default in a way doing ART?

I'm so confused as recently having a mellow dinner with our neighbors across the street at their house caused a bad PEM episode. And a few nights ago we found a fawn in our driveway with a terrible broken leg which caused me to get upset and cry and I ended up with PEM as a result. For me PEM almost always hits me immediately after whatever caused it. And I can do something one time and it not cause PEM and the next time it does cause it. ????

I am of the understanding that the most important thing for me to focus on is preventing PEM. But already being almost totally housebound/bed/chairbound already I don't know where to go from here. Do I get even more aggressive and stop going to the grocery store, cooking dinner, and just rest completely for a while or do I keep doing what I am doing? I worry about deconditioning but I know that it's a bit out of my hands at this point due to my PEM threshold being so low.

I am 36 yrs old, married, childfree, and was already disabled and not working since 2013 due to serious brachial plexus damage caused by a birth defect. I am on SSDI as a result. My spouse is retired and is with me all the time and has been really great through this all.

Sorry to post such a long post but I've been perusing PR for weeks now and waiting for the moment I felt inspired to ask for help and input.

 

[Sasha]

Hi @TrishaMafia - I'm sorry you've had such a rough time of it.

I can't advise - I don't think any of us know enough about how to balance ART with other things to advise - but ART is resting more than you think you need to rest - trying to rest right underneath the illness, so that your body can use the surplus energy to heal rather than just cope. I think you're just resting a lot, but not doing ART, by the sound of things.

 

[trishrhymes]

Hi TrishaMafia,

I really sympathise with you and all your troubles. I wonder whether you can find a way of keeping up some activities but do them in tiny bursts with complete rest in between.

Trips out to the grocery store or to visit friends are great for morale, but I'm imagining each can keep you active for an hour or more at a time which can be exhausting.

Trouble is, it's hard to shorten a social visit, unless you can arrive, chat etc, then lie down in a quite room for 20 minutes, then get up and have the meal, so the visit is still enjoyable, but broken up with rests. Does this make sense?

I do hope you find a way forward. So good you have a supportive spouse.

Best wishes.

 

[Sasha]

For the month I'm going to be doing this, I've told my friends not to expect to see me - or that if I see them at all, it might need to be in 20 min sessions.

I live alone, so this will be isolating, but I think it's worth the investment.