Aggressive Rest Therapy: My Experience

[Strawberry]

Honestly I haven't sussed this in 18 years! Sometimes it can be a sort of symptom in itself, part of tired but wired state, so be gentle on yourself. Some techniques help some of the time. Personally I find this most reliable as it calms without having to put effort into calming my mind:
https://tipsforme.wordpress.com/2014/04/04/review-yoga-nidra/

Thank you @Jenny TipsforME ! I'm not sure if this is wired but tired, or type A personality, but that yoga link may help both. I will look into it more thoroughly this weekend.

 

[Hilary]

@Jenny TipsforME - thanks for the reminder about yoga nidra which I used to practise years ago. I'd forgotten how helpful it can be - very calming without much/any effort whereas I never seem to get anywhere with meditation - my mind is always all over the shop and I just find it counter-productive.

 

[Spoons]

Hi

I've taken 4 weeks 'medical leave from life' to give this a proper go; currently at the end of week 1.

I overdid it a bit the day before I started so I had some PEM the first couple of days, but I've been feeling so much more tired all week. I was worried I'd be bored doing no-stimulation rest, but I'm too tired to be bored! I'm experiencing greater effects of doing things than I was just a week ago. (Example - I spoke to my dad on the phone for 30 minutes this evening & I'm exhausted. Last week I felt ok-enough afterwards with a bit of rest).

Anyone else experience this? I know the idea of ART is basically to rest more than you need in order for your body to be able to heal a bit, but I'm concerned I'm needing more and more rest and it's only been a week. I know I've read in this thread that some people felt worse before they felt better, but I guess I'm worried I'm just sending myself backwards somehow?

 

[Cheesus]

Hi @Spoons

It's a little difficult to say for sure to be honest. I think we could all react differently to the therapy depending on what kind of ME we have. So you have been managing to rest far in excess of anything you would usually do?

 

[Spoons]

Hi

Yes, I've gotten myself into a routine of much more rest. Previously I would only rest lying on the sofa watching easy tv, but I'm doing big chunks of no-stimulation rest (in bed with no tv/music/etc, eyes closed - I never fall asleep but have felt close to it a couple of times) and also reducing my energy expenditure elsewhere by doing things like having healthy food I can stick in the oven/microwave to reduce cooking/washing-up energy.

I'm also not seeing anyone in person or talking to them on the phone (except my dad once a week as he's rubbish at texting!) as that's incredibly draining for me. But mentally that's been ok so far (though I know it's only been a week).

I have a very immune-y ME; I usually get cold-like symptoms & swollen glands as part of my PEM.

I'm hoping the fact I'm feeling more tired means my body is doing something. I think it's probably just that fear of sliding back into more severely ill & losing the slow improvements I have made (I'd say I was moderate now).

Are you still giving ART another go?

 

[Cheesus]

@Spoons Unfortunately I can't give you any more information. I certainly hope you begin to move forward again soon.

I have literally just started again today. I am feeling good about this attempt. Usually my biggest vice is the constant distraction of my laptop, but I have downloaded some productivity software that can block apps and webpages according to a schedule, which is forcing me to rest. I am feeling more motivated with this attempt too. I am hoping to see some change - for better or worse - in about two weeks.

 

[trishrhymes]

I haven't managed to do a proper slowdown yet, well done to you Spoons and Cheesus for giving it a go. From what I've read, other people find they feel worse, more tired etc for a while before starting to improve. I would guess a week is too soon to start worrying. If and when I ever manage to organise myself to try aggressive rest therapy I would expect to do it for 3 or 4 weeks before starting to build up gradually again, but everyone's different. Thank you for reviving this thread. It's reminded me to have another go. Good luck to both of you.

 

[Spoons]

@Cheesus I know what you mean, playing on the internet on my phone is definitely my vice. I'm limiting myself to checking it 2/3 times a day, but it's been the hardest thing to stop doing haha. Good luck with your ART, let me know how it goes.

@trishrhymes Thanks. Good luck to you too when you get started.

 

[Cheesus]

@Cheesus I know what you mean, playing on the internet on my phone is definitely my vice. I'm limiting myself to checking it 2/3 times a day, but it's been the hardest thing to stop doing haha. Good luck with your ART, let me know how it goes.

I've had my parents put a restrictions code on my iPhone so I can use it for only the most basic things. I've removed Safari, email, Spotify, Podcasts, news and anything else distracting I could find (I left Whatsapp because I would be very isolated without it). That way, I have to route most of my activity through my laptop, and if this productivity software is currently blocking my laptop then I am literally forced to not use any gadgets.

The software I am using is called Cold Turkey. Most software like this makes you pay a subscription, but there is a free version of Cold Turkey and for the pro version - which is well worth buying - you pay a one-off fee of 25 Canadian dollars.

It is a pretty brutal programme, however. Once you've locked yourself out then that is it, you can't get back in until the timer is done. I know a little bit about computers and I was left completely stumped by it.

 

[trishrhymes]

I began to realise yesterday that my use of technology is getting out of hand. Actually, that's a lie, I've known it for some time.

I have a laptop and a new little tablet computer and an old tablet that's very slow and unreliable. I was lying in bed yesterday afternoon half watching half listening to a TV program (political discussion) on the laptop on a bed table, playing a game on my new tablet (plants versus zombies) and every now and then checking whether the old tablet was downloading something else.

And I called that resting! Madness.

Feeling quite proud now. I've managed to lie with my eyes closed in the dark listening to a radio program for half an hour. Well, I guess that's a sort of progress.

In case you're wondering, I'm housebound and spend at least half the day lying in bed, the other half sitting with legs stretched out along a sofa, with occasional forays to kitchen to assemble meals etc. I would be better ME wise lying down more, but have developed a hiatus hernia recently and need to sit up after meals. I employ a cleaner, and some help with housekeeping, hair washing etc.

I've been wearing a fitbit for about 6 months which has helped greatly with pacing, so I now aim for 1250 'steps' (or rather arm movements, since it's on my wrist) per day. (I was on more like 2000 to 3000 'steps' when I first started wearing it). As a result I have a bit less muscle pain and fewer headaches, and haven't crashed badly during that 6 months.

So I reckon I've got the level of physical activity about right. I find it much harder to cut back the mental activity. I think I won't make a real step forward until I can switch off my mind and rest completely for longer periods each day to really allow my body to have a chance to heal. Hence my interest in ART.

Thanks Cheesus for the suggestion about cold turkey. I might have a look, or I might just create my own version by putting it physically out of reach when I'm in bed. Hmm. Can I make myself do it?

Let us know how you get on.

 

[Cheesus]

@trishrhymes

It is definitely the mental activity that is the toughest. You don't necessarily get bored by cutting back on physical activity, but cutting back on mental activity take a huge amount of willpower.

I might just create my own version by putting it physically out of reach when I'm in bed. Hmm. Can I make myself do it?

If you can then you're a stronger person than me!

 

[TigerLilea]

I have to say I do sleep better with more activity -- provided I don't crash.

I definitely sleep better with more activity. However, if I overdo the activity then I get to the point where I am almost too tired to fall asleep and it can take me hours.

As to aggressive rest therapy, years ago my doctor had me take it easy during the day and a minimum of two hours nap in the afternoon. After four months of doing this my CFS/ME got so much worse, I couldn't think, and I was absolutely miserable. She realized her advice wasn't the best and told me to stop napping and do what I felt up to doing. I do much better if I am at least slightly active during the day even on my really bad days.

 

[Lolo]

@trishrhymes

It is definitely the mental activity that is the toughest. You don't necessarily get bored by cutting back on physical activity, but cutting back on mental activity take a huge amount of willpower.

If you can then you're a stronger person than me!

I really struggle with this as well. If I don't do enough mental activity I can't get to sleep at night.

I definitely sleep better with more activity. However, if I overdo the activity then I get to the point where I am almost too tired to fall asleep and it can take me hours.

As to aggressive rest therapy, years ago my doctor had me take it easy during the day and a minimum of two hours nap in the afternoon. After four months of doing this my CFS/ME got so much worse, I couldn't think, and I was absolutely miserable. She realized her advice wasn't the best and told me to stop napping and do what I felt up to doing. I do much better if I am at least slightly active during the day even on my really bad days.

It is a matter of getting the right balance which can change from day to day, moment to moment

I can feel pretty bad in the afternoons but sometimes I just have to get up and go outside or I feel like I will go mad.
I get bored of reading so I have been learning to read latin through U3A even though I miss half the classes. It uses the brain differently. I have found to get the best rest is to lay very quietly and still and put all of my attention on the quietness and stillness in the middle of my chest. Yoga nidra is also good if I can concentrate.

 

[Janice Hargreaves]

I discovered for me personally that going completely horizontal (not even a pillow ) for 10 to 20 mins 3 or 4 times a day really helps. Obviously not a cure but helps me crawl out of a crash as long as I can remain patient with myself. I also find that doing complete yoga type breathing exercises where on the in breath I count slowly and calmly for 6 to 8 (whatever is comfortable) then pause for a second or two with my lungs full, then slow out breath again counting 6 to 8. Again pause for second or two before starting cycle again. If I do 3 to 5 rounds of this then I feel less agitated. Sometimes I need to add another layer to calm my mind, so on the out breath using my abdominal muscles to draw in my belly towards my spine to help empty the last bit of stale air in base of my lungs. I hope that makes some sense? I found Judith Lassiter's book Relax and Renew very good at giving me a variety of poses which teach me to relax, let go and heal. I use only the horizontal ones.

 

[GlassCannonLife]

Anyone from this thread still around? Or did you all get cured by ART..?

@Cheesus

 

[frozenborderline]

 

[Consul]

Anyone from this thread still around? Or did you all get cured by ART..?

@Cheesus

Have you concidered trying my meditation technique? Its in the alternative treatment section.

 

[christiankatz]

I can't say I'm doing ART, but it feels aggressive to me. I'm in bed or resting about 15-plus hours each day for about the last month, and I'm feeling better and finally out of a very long crash, and the brain fog has decreased dramatically. I try not to stand up more than 2-3 minutes at a time, which makes it hard to get anything done, but it's worth it.

 

[GlassCannonLife]

I can't say I'm doing ART, but it feels aggressive to me. I'm in bed or resting about 15-plus hours each day for about the last month, and I'm feeling better and finally out of a very long crash, and the brain fog has decreased dramatically. I try not to stand up more than 2-3 minutes at a time, which makes it hard to get anything done, but it's worth it.

Resting in bed for 15+ h sounds like ART to me? Unless you are still doing things during the rest.

I just had my worst crash ever and am trying to get out of it using ART. Same type of thing, literally lying in bed the entire day with minimal phone use, only get up to use the bathroom and eat meals in bed.

ART seems very interesting overall, a lot of success stories as far as ME treatments go, but somehow no interest in it in recent times..

 

[GlassCannonLife]

@Strawberry have you tried ART since this 2016 thread was going on?