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Trying to rest more as a treatment

Discussion in 'General Treatment' started by lior, Dec 28, 2017.

  1. lior

    lior Senior Member

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    This is what the CFS specialist unit in St Heliers/ Sutton has to say on rest:
    https://www.epsom-sthelier.nhs.uk/chronic-fatigue-syndrome/?smbfolder=89
    Scroll down and click the 'what is rest' PDF.

    My backstory: ill for 15 months, diagnosed 8 months in, first specialist clinic appt 14 months in where they confirmed diagnosis and gave me info and an activity log worksheet.

    Before I got ill, I was super productive, a social entrepreneur, and a community leader in my profession. I have never been very good at rest, and I used to suffer badly with anxiety and depression. I struggle with letting my mind go blank, unless it's blank because I've run out of energy.

    The nurse at Sutton said I have to do more 'proactive' rest rather than 'reactive' rest - to pre-emptively rest, rather than rest because I have run out of energy. My rest was all reactive before.

    Yesterday I started trying to make a habit of resting in the afternoon for 20 mins in one of the position in this PDF. The idea is to build more proper rest into my routine. I have been boom and busting, rather than resting too much.

    Yesterday I kept bursting out into laughter when I was trying to rest... I think it was nerves! It felt so unnatural to be resting when I didn't need it. Eventually I got to a nice half-sleep mind-blank state. I didn't fall asleep because the timer was on for 20 mins. It was just right. I forced myself to wake up after that even though I really wanted to sleep.

    Today, I really didn't want to rest, so I ended up tackling a big pile of washing up instead which is high level activity for me. And then - when I finally die lie down in a position from the sheet - I couldn't let go because I was TOO COMFORTABLE! Wtf? Why was it UNCOMFORTABLE to be comfortable? I tried for 10 mins but I felt too restless. I want to move, not rest.

    I keep feeling that either way I'm buggered. I don't know what the right thing to do is - when I should rest, when I should move, and how much, and whose guidance I should listen to. I'm going to keep trying with this 20 mins daily rest experiment to see if it makes a difference.

    But I need help. Do any of you relate to my experiences about being too comfortable, and not being able to let go? How do you overcome this?

    Also, has it worked for any of you to rest in the way described in the CFS clinic pdf? What would you add or change in the PDF?
     
  2. pamojja

    pamojja Senior Member

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    Don't know if it applies to you to, but in the past when I tried persistent meditation, I learned that any activity - physical or mental, social or just for distraction, something casual as eating or chatting - all really helps with not really be confronted with that thing - which is oneself. It takes a lot of courage, patience and kindness.

    One good thing the way you do it is, that you don't overdo it right away. By setting aside just 20 minutes each day. Also wouldn't follow any suggestions (as on that automatically played tape on that side), but each time just be curios and explore anything that comes naturally. One time maybe be one-pointedly aware of the feeling of breathing only, at other times exploring from where the thoughts come from, at other time just fully perceive what ever might come up. Like in the example you give, feeling too much restless. How does that feel all over your body? - from moment to moment, and not trying to give preference to any experience or avoiding an other. Just let come and go whatever is, and do nothing than being aware. From being distracted always simply come back to being aware (of being distracted).

    Most common experiences in the beginning are restlessness and worry, boredom and dullness, craving and aversion, up or downright lust and hatred. But there is an other side with persistence and kindness to all what might come up.
     
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  3. BadBadBear

    BadBadBear Senior Member

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    I suspect if you just devote yourself to the idea that you are going to rest every day around the same time for the same amount of time, your body will learn to let go and quiet down. I almost always recline for a while around 2:30 or so, and even if I don't feel like resting, now I'll almost invariably fall asleep for a while, and wake up better than I started.
     
  4. Mary

    Mary Senior Member

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    When I have energy, I don't want to rest. But I have learned my limits over the past 19 years (which are 3-1/2 to 4 hours of light activity a day, with rest breaks in between). So even if I still have energy after doing some things, I force myself to stop and rest - otherwise I crash the next day.

    Have you found out what you can do safely without crashing, what your activity window is? Mine is pretty constant.
     
  5. CFSTheBear

    CFSTheBear Senior Member

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    It is unbelievably difficult to get into this, so I sympthathise.

    I'm on the severe end of things, and basically one day after feeling worse and worse day after day I decided I was just going to be really extreme and see if resting helped. To that end, I rested every 20 minutes for 10 minutes, which was absolute torture at the start.

    Mild improvement (still couch bound, but I can do stuff like read / play computer games / chat to people now, whereas that was all off the table 3 months ago) has meant that I've taken my foot off the gas ever so slightly. I now rest for 10 minutes every 30 minutes or so.

    Now, this has worked for me (to an extent) but I think it's about what finding works for you. I also think that this no stimulus resting is actually really difficult to get into, so maybe start by taking your regular rests with a podcast / relaxing music, then slowly phase them out.

    I've found it's the only thing that'll allow me to keep my symptoms in check on a relatively consistent basis.
     
  6. boombachi

    boombachi Senior Member

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    I can relate to what you are saying. I hate resting. I am easily bored and I often get carried away with activities and overdo it.

    In my experience, limiting activity is the best way to manage my symptoms and I don't need to rest as much if I do that right. By limiting activity, I mean physically demanding activities like cleaning and walking. I can do short bursts. This way I can increase my overall functioning.

    A lot of people say that true rest means not reading or watching tv but this doesn't work for me. I watch a lot of netflix and read or play candy crush to keep my mind busy and my body idle. I also lie down whenever I can. This is what works for me.

    Having said all that, I am mildly affected and my symptoms fluctuate. There were times in the past when I could have laid in bed all day not thinking of anything.

    It sounds like the rest does work for you if you persevere but you are not motivated to do it. Keep at it for a while. If it works you might start looking forward to it.
     
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  7. lior

    lior Senior Member

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    Wow, so impressed with this amount and quality of response. I will get back to you properly when I can :)

    I've been prescribed Phenergan as a sleep aid. I took it once a few days ago and slept 2am til 4pm the next day - that kind of length of sleep hasn't happened since I first got ill. I didn't realise it worked over hours and hours, I thought it was just meant to help in the getting-to-sleep bit, not the staying-asleep bit. Ignorant of me, I used to always do my research. I took it about 30 mins ago... so I really need to shut up, log off, wind down...

    There's something about being scared of being asleep/falling asleep... I want to be fully awake. I hate it that I'm so low energy so much of the time.
     
  8. Mary

    Mary Senior Member

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    @lior - I should add that I am like @boombachi in that I read a lot or watch Netflix when I'm resting. It works for me, although it has to be low stress Netflix or reading. I can feel the drain if it's something stressful. I know many can't do this, that this mental activity will wipe them out. One time I watched a very interesting talk on DVD by a doctor (Nicholas Gonzalez) about an alternative cancer therapy (pancreatic enzymes). It was fascinating and I think a little over 2 hours long and it used all my brain power plus I kept stopping to repeat certain sections so it was 3 hours of total intense concentration. And I was crashed the next day.

    Re the Phenergan - I just looked it up - it's an antihistamine. Interesting it knocked you out for so long. Last June I was told about Unisom (a very old antihistamine) for sleep and fortunately I started with 1/4 of a tablet - and it knocked me out, I slept very hard. I'd been having rather severe trouble sleeping ever since tapering off of lorazepam which I'd been taking in the middle of the night for sleep for years. Unisom was much more potent than Benadryl.

    Anyways, you might try cutting the Phenergan in quarters and see how you do. The other thing is, after about 2 weeks, the Unisom stopped working. I did not want to increase the dose so stopped it and have been trying different things ever since for sleep, though periodically I will go back on the Unisom for a short period. It works when I don't take it all the time.
     
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  9. E.man

    E.man Senior Member

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    I have noticed meds can impact on me more than the standard amount cos of the ME.

    Stop doing things before you have to. Leave a buffer to the point where you would have to stop . That way you rest before being forced to. It does mean more time hanging about and you have to feel the body more subtly but it reduces a total crash.
    (If you're not able to do anything then you will be passing out anyway :( ).
     
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  10. lior

    lior Senior Member

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    Since I wrote on here, I have tried resting but without all the pillow positions faff that the clinic recommends. It still works to rest like that. It takes me more than 20 mins to fall asleep, so I can act like I'm going to fall asleep and get into a good restful state. I can't always stop thinking but it's at least low level activity/energy spending.

    I have been on 1/2 Phenergan pills.... it makes me drowsy all the time. I don't feel awake until 2 days after stopping taking it. It's different from normal ME sleepiness - there's more numbness and body heaviness, and it's a bit different, but I can't describe it.

    Last night I took the dose at 8.30pm, fell asleep at 11pm, then woke up at 3pm for more than an hour. So it didn't help me stay asleep, though I still feel drowsy and heavy. I'm disappointed. And it was still hard to wake up. Maybe pills aren't going to help me as much as I thought they would.

    I don't really like the feeling of not being able to feel my fingers... I'm not sure if I want to keep taking it. Especially if it's not really helping me stay asleep. It does help me get to sleep earlier though. I wouldn't have been able to fall asleep at 11pm without it.
     
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  11. lior

    lior Senior Member

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    I am summarising all your main points here:

    @pamojja
    Doing other things is avoiding being confronted by oneself.
    Good to not overdo it right away, by doing just 20 minutes each day.
    Start small with various elements/types of meditation exercises.
    Unpleasant feelings come up in the beginning when starting meditating, but kindness comes up too.

    @BadBadBear
    One's body will adjust to the habit of resting, and the effect will become good once the habit is built.
    Rest at the same time every day.

    @Mary
    Rest even if you don't feel like it, or you will crash.
    Learn what your limit is and don't go past it.
    Watch low-stress TV - it's possible to crash from TV that takes a lot of concentration. (I learnt about this a few months in - it was one of the first things I learnt, there's such a stark difference in me if I watch a light comedy vs something like The Handmaid's Tale.)
    Try cutting Phenergan into quarters.
    Some sleeping aids work better if you don't take them all the time.

    @jstash
    'no stimulus resting is actually really difficult to get into' so start with a podcast/similar and phase out using it.
    Resting every 20 minutes for 10 minutes helped, now doing 10 mins rest every 30 mins.

    @boombachi
    Limiting activity more can reduce the need for rests. Do cleaning etc in short bursts.
    Playing phone games/netflix to keep body idle while mind is working can still help.
    Lie down whenever possible.

    @E.man
    ME makes me more sensitive to meds.
    Stop doing things before your body forces you to stop - leave a buffer.

    _________________________________________

    Thank you very much for all your wisdom :)
    It helps me to not make such a big deal out of resting. Just having a nap but not quite falling asleep makes me feel less self conscious than the clinic worksheet suggestions.
    I'm normally resting at about 5.30. I wake up around 1pm these days, so I can be in a local cafe 3.30-5pm. The Simpsons is on at 6pm so that's enough of a draw to get me out of bed and stop resting.., or I might be asleep all day. I would like to wake up at 11am and shift my rest to earlier in the day... but I haven't quite got there yet.


    I don't know my limits yet. I know I'm passing them regularly still. But I'm getting better and better at honouring it when I'm tired instead of pressing on and forcing myself to think/talk/focus/move. I have reduced my activities a lot and I'm working on setting and keeping monthly and weekly activity limits. Building a resting habit is helping limit my daily activities.

    Activities I can do with minimal PEM: watching TV, writing in my journal, phone games.

    Is there a methodical way to work out my activity window? The well-me could have worked out a method but it's just completely eluding me how to work out my limits.


    This idea really scared me. Doing this method means no going out, no visits from friends... if we're talking about lying-down rests. I don't want to stop going out. I'm terrified of limiting myself more. Also scared that limiting myself more is the only way to get better and I'm also afraid of not getting better. But I don't know for sure what is going to make me better. I'm afraid that resting more is going to make me more deconditioned.

    I'm scared and confused. I don't believe that it's only that my muscles are weak that I'm not able to move like I used to. There's something else - I feel drained of energy. It's not about my muscles being weak. I don't know if I can trust the doctors if they insist it's only deconditioning. I felt that body-drainedness while I was still able to go to yoga, and not deconditioned at all. I felt it today after a walk - I was in the fruit aisle in sainsbury's and I couldn't move - was holding on to the pear basket for balance. Couldn't speak to ask for help. People looked at me funny and my face must have been scowling.

    I'm doing 10 mins of yoga twice a day, so I really hope that's doing something to offset resting more. Recently I have been sleeping a lot because of the phenergan.

    @jstash could you please describe what an example hour would be like for you? Does a rest involve darkness, or can you rest with other people around? Do you do no-stimulus rest? Does it affect how well you can rest if you have been doing certain types of activity?
     
  12. E.man

    E.man Senior Member

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    Forget about 'deconditioning ' . You feel drained of energy because you have a serious illness.
    Just getting out to the cafe is a good aim but expect your activity window to move around and change.
     
  13. char47

    char47 Senior Member

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    The notion that muscle weakness in ME is merely deconditioning is pure nonsense. There is plenty of scientific evidence of something more than deconditioning going on, regardless of what your Dr's might say. Just because they haven't seen the research doesn't mean it doesn't exist. That is a discussion for another thread, but just to say please don't be concerned about that too much.

    - I mean of course, if you were a mild sufferer - ie capable of work plus some exercise with limitations, then laying in bed 24/7 would be unwise, but i never met a person with ME that didn't want to do more than they really could without paying a price so, don't let fear of deconditioning stop you from appropriate resting.

    I felt the same about resting as you did at the beginning too... SOOOO hard!

    I have found that the thing that helps me is just to 'assume the position' whether i want to or not, (- that 'position' being the one i find most comfortable at the time....) So if i have decided as part of my pacing plan to 'rest' for 30 minutes I just lie down/recline (i always lie or recline because sometimes i find that when my body most needs rest only lying down will really allow it to come.
    And then I find the key is not to try to rest, not to try to clear my mind or whatever because that just adds pressure & psychological discomfort. You cannot try & rest - trying is active. It's more an attitude of letting it happen if it does & not getting irritated or concerned if i stay mentally restless. I look upon it as giving my body & mind the opportunity to take the rest if it needs/wants it, rather than trying to do it.

    I've found these free meditations from Kristin really helpful. Especially the 'noting' one
    http://self-compassion.org/category/exercises/

    Andrew Johnson (withandrewjohnson.com) also does a really good relaxation mp3 set called 'take a break', which is the best i've ever come across - you'd need to search for it by name on the site as it's not easy to find - the meditations are just 5 minutes or so long but they get me started & often just lie quietly for the remainder of my rest period - indeed i often use them as a tool to see how my body really is doing rather than how i think it's doing. BUT do be aware that most of his work is 'woo' - 'healing through positive thinking/self hypnosis/NLP' & all that, some of which i feel is very unhealthy personally. But some of his relaxation meditations are very good indeed.
     
  14. lior

    lior Senior Member

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    Thank you both. Reading research makes me overwhelmed so I'm not ready to learn about the science yet. So I appreciate you both telling me that about deconditioning.

    I like the idea 'assume the position', and my body&mind will take the rest if it needs it. I'll try and use that to persuade myself to rest.

    I'm not very good at not trying.

    Thank you for the meditation recommendations :) I listen to Kristen Neff sometimes already and now I've added Andrew Johnson to my Insight Timer bookmarks. (Insight Timer is the meditation app I use.)
     
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  15. E.man

    E.man Senior Member

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    Look up Yoga Nidra too.
     
  16. Mary

    Mary Senior Member

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    Some people use staying within their anaerobic threshold to help prevent PEM. This appears to be a very good article which explains very clearly how to calculate this: http://www.cfidsselfhelp.org/librar...our-heart-rate-to-stay-inside-energy-envelope

    I've never done that. I just learned from experience what my limits are and I'm pretty good at staying within them (though sometimes I get taken by surprise!) For me, I'm roughly able to do 3-1/2 to 4 hours of light activity a day - with lots of breaks - e.g., I couldn't walk for probably over 20 minutes without getting into trouble. And then I'd have to rest. My day generally ends between noon - 1:00 p.m.
     
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  17. CFSTheBear

    CFSTheBear Senior Member

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    I would not worry as much about what I do and find something that is at least a starting point for you. The reason I say that is that your level of functioning seems far higher than mine in that you are able to go out briefly, even with symptoms.

    However - in terms of rest, no I just rest where I am, which is a bed (different to the bed I sleep in) that I spend my day on. I try to rest fairly consistently, and I haven't seen anyone other than my parents in months, but this is because I do not feel well enough to do so, rather than a conscious effort. However, if someone were to come round, I'd imagine it'd be pretty easy to a) make a compromise and say see them for an hour before resting, or b) let them know that you want to be very strict about resting and it helps control symptoms, and maybe they can sit and read a book for 10/15 minutes while you rest, and then resuming chatting. Does that make sense?

    Generally my day is made up of watching Netflix, playing video games occasionally, listening to podcasts/audiobooks, the odd bit of light reading online, chatting to friends via messaging apps. Those are all broken up by rests - to be honest I'm in awe of people who are able to actually drop off to properly nap during the day - it's something that even when I'm feeling significantly worse than my poor baseline of health I can never manage to do.

    Anyway, hope that helps.
     

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