Severe ME Day of Understanding and Remembrance: Aug. 8, 2017
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Resting

Discussion in 'General ME/CFS Discussion' started by Catjbro, May 13, 2016.

  1. Catjbro

    Catjbro

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    I'm serious when I ask - how the hell do you rest when you can't do much. I can't sit so I'm laying. Can't read much. I'm realizing I have no idea how to be and just rest. I'm constantly looking online which is just wearing me out more. I start listening to a book but have this constant urge to do something, anything, but I can't.

    How do you just rest and deal with the urge to be active, all the loneliness, feelings, isolation that comes with it. I find trying to distract exhausting. God this is maddening. Sorry for all the questions but most of my life not knowing what was wrong I just pushed thru and ran on adrenaline. Now I can't anymore my
    Mind and body are done.

    I have no idea how to live like this. I'm even wearing myself out being on here but it's driving me mad the urge to do something, I'm so exhausted in every way but this part of me won't settle, also with the loneliness, the Emotional exhaustion. I haven't been able to cry for 5 months. Maybe that's a good thing. I used to like to nap or have a rest but now that it's all I can do its not something I like or want but know it's necessary but can't do. I also feel the crash worsening so I think part of it I'm trying to avoid what's coming - more pain and exhaustion. This part of me keeps going on and on how "I can't do this".
    Cathy
     
    Last edited by a moderator: May 13, 2016
  2. daisybell

    daisybell Senior Member

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    Can you listen to music? Relaxing sounds?
    It sounds like you need to find some way to give yourself permission to just 'be'. If you can think about this as a positive step towards feeling better, even if only slightly, will that make it easier. Rest is your therapy.
    If I need to relax and rest when I'm feeling really tense or unable to unwind, I go through each part of my body in turn, focusing on relaxing each muscle, and then checking back a few minutes later that I haven't tensed it again. I give myself praise for managing this!!!

    The only way to get through this for me is by accepting how I am in each moment. That doesn't mean I will stay feeling that way - it's just that I have given myself permission to feel as I do, without guilt or anxiety if possible. Then I can focus on strategies to improve that state without feeling desperate. I don't know if that makes sense to you....
     
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  3. Catjbro

    Catjbro

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    I think you are right - I'm afraid of what is yet to come. For years I pushed and ran on adrenaline and when the crash started getting too much I just added anxiety and more adrenaline so I didn't have to face it. Now I've kind of stopped, and the crash keeps deepening and it's getting worse and I'm afraid how deep it will he. I've been pushing myself and avoiding this pain for so long I don't know how not to. I have s lot of anxiety issues due to childhood trauma and this kind of stuff freaks me out. I have to somehow allow whatever happens to happen.
     
  4. Firefly_

    Firefly_ Senior Member

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    I know exactly what you are going through. Drove me absolutely crazy just laying there (pre illness was always working hard and busy). I found my salvation listening to podcasts dealing with cfs/fatigue/adrenal issues, etc which got me on the road to finding and trying different treatments, which in turn got me just well enough to start researching online and so on and so forth.

    One of my passions when I was being still was reading and losing that was tragic so I am infinitely grateful that I have recovered the ability to read again, just can't do complicated plots or too many characters to remember lol.

    Anyways, to answer your original question (I get derailed a lot!) I felt like I was doing something listening to those podcasts instead of running the hamster wheel of my mind.
     
  5. gregh286

    gregh286 Senior Member

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    Pretty much the story of all of us. Read wilsons adrenal fatigue book.
    I had a neurohormone test done....norepinphine pretty much extinct. Adrenal glands no capacity. I am almost at full recovery level now.
    There is only a few ways to adress it from what i have learned. First you need to make.sure your cortisol production is low so adrenals can rest. No stress and high carb intake. Amitripline will allow you to get heavy rest. Next you can load up on l dopa....supplies the dopamine chain which precursor epinephine and norephinephine. Avoid all stimulus...rushes or euphoria. Take adrenal support like nutri extra.....contains glandulars dessicrated. Sleep is not as important as adrenal rest....not same thing. Can sleep all night and get stressed during day can make you go backwards.
    Massage relaxs adrenals very much....good to get them if you are not housebound.
    Pregnenolone supplement will take extra load from hpa to create hormones.
    I was a constant adrenaline junkie also until this kicked in. It is possible to attain full health again if you take correct steps.
     
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  6. Catjbro

    Catjbro

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    Can't handle glandulars and need prescription for pregnenoline in Canada. My body just automatically stresses and goes into anxiety no matter what I do
     
  7. Little Bluestem

    Little Bluestem All Good Things Must Come to an End

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    How does one go about getting a neurohormone test?
     
  8. u&iraok

    u&iraok Senior Member

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    I'm sorry you're having such a hard time. I know what you mean.

    My ADD makes me crazy when I try to rest. I'm always wanting to pop up off the couch. I used to like being productive and now that I'm not I'm trying to find value in 'being' and not 'doing'. I don't know what you can handle, but for me this is what works:

    Watch non-stimulating old movies on low volume. They make you feel good, too.

    Color in a coloring book.

    Look at pictures in art books or magazines.

    Do easy puzzle books.

    Lay down outside and listen to the birds and watch the animals and look at the plants and flowers.

    Read juvenile or young adult books, even if it's just a few paragraphs. They're fun!

    Read the bible, just a few paragraphs.

    Listen to soothing music.

    Video games. Must be non-stressful and not for too long.

    Write in a diary. Also good for keeping track of symptoms and protocols/regimes.

    Text or email friends or send them a card. Just a line will do. Don't talk about your illness.Good when talking on the phone or visiting is too much. Will ease loneliness. Don't wait for them, they don't know what to say. As an extra bonus when they're sick send them a card and cheer them up!

    I have in the past done needlework crafts. The repetition is soothing. If I made mistakes I just pulled it out and started over.

    Alternate often between all the above to ease my ADD.
     
  9. Catjbro

    Catjbro

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    I have low cortisol across the board. The glandulars are too stimulating for me and I wanted to try pregnenoline but here in Canada u need a Rx and dr won't give me one. I have read Dr Wilsons book and used his supplements for a while.

    I'm going to try NADH as its supposed to increase dopamine.

    I find I just can't get out of the cycle of the anxiety and being so easily stressed over nothing that comes from the low cortisol and continue to crash. I know something isn't stressful but my body continues to register it as stress. I read on here somewhere that NAG is good for anxiety so might try it. I'm on the basics - Vit C, the B's, mag, digestive enzymes, glutathione, pantethese and am trying low dose lucoruce root.
     
  10. PennyIA

    PennyIA Senior Member

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    Learning to knit is NOT something I would recommend to anyone with CFS as it takes a great deal of concentration at the start and can trigger PEM - but it's soothing and almost meditative for me since I managed to learn it when I was starting to go into remission. I also love that I can donate hats & scarves to homeless shelters as it helps me feel like I'm productive and I can even knit from bed in a prone position.

    Since that's probably not an option. I know you said tv is a problem... but I wonder if it's because it's too stimulating? I ask, because lately the best way for me to fall asleep at night is that I have a couple of Netflix shows that I play on repeat. I've watched them so often I have the episodes virtually memorized, but... it's also not that stimulating because I know the whole thing. I have the volume on low, and the settings on the tv to dim... and it's just distracting enough that I'm not dwelling on things I cannot change without keeping me awake at night. When I'm struggling with PEM I do something similar (even though my goal is rest and not necessarily sleep) and it seems to help. Call it 'assisted' meditation - lol... (folks laugh at me when I call it that).
     
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  11. SickOfSickness

    SickOfSickness Senior Member

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    You will probably have to go back and forth between denial, depression, and anger for a while :( Eventually you get to acceptance more and more, and figure out some kind of life with the illness. But it's a very hard thing to go through.

    Acceptance doesn't mean just doing nothing. You can accept it but also try to improve things with treatments and doctors.

    They say we're living in an ADHD world, where everyone is acting like they have ADHD. Commercials try to grab your attention in the first 3 seconds, because we're that impatient. Don't be too hard on yourself for struggling to slow down. It's normal.

    I have to take supplements so I don't feel anxious as much. When I was younger, I could exercise and that keeps anxiety lower naturally.

    I think crying is healthy and helpful. I think it helps you put something a little farther behind you. A sad youtube clip, a short story, or a song might get you crying if you want to try that. If you still can't, I'm sorry.
     
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  12. Catjbro

    Catjbro

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    Thanks for your advice. What supplements do you take for anxiety?
     
  13. SickOfSickness

    SickOfSickness Senior Member

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    GABA is a simple one that helps me.

    I think when I take adrenal or thyroid supplements, it helps. Also supplements for energy (mitochondria), so I'm not pushing myself and taxing my adrenals as much.

    I take Inositol sometimes. I think that's for anxiety too. Also supplements for serotonin.

    I want to try NAG.

    You may want to see Hip's thread. http://forums.phoenixrising.me/inde...nxiety-symptoms-with-three-supplements.18369/
     
    Jennifer J likes this.
  14. Wolfiness

    Wolfiness Activity Level 0

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    A beautiful exposition of one of the central issues of ME. I have been in bed 99% of the last 15 years and I still don't know how to rest. All the relaxation and meditation techniques I try are mentally exhausting even when I don't try too hard. I'm thinking if only I could get a wonderful bed and mattress I could see rest as a luxury/pleasure rather than a chore. Big sympathy to you.
     
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  15. Catjbro

    Catjbro

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    I know exactly what u mean about relaxation & meditation techniques being exhausting!

    If I had the money I would but u a new bed!
     
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  16. Wolfiness

    Wolfiness Activity Level 0

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    I don't have one either! :(
     

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