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We’ve all seen them in the news stories about ME/CFS: the guy in a suit at the office, yawning; the beautiful woman sitting at her desk with her immaculate make-up and elegantly coiffed hair, hand to her head and looking slightly pained.
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How can I do nothing

Discussion in 'General ME/CFS Discussion' started by Puppyoongis, Mar 31, 2017.

  1. Puppyoongis

    Puppyoongis

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    One of the parts of pacing is that you have to take things slow and do pretty much nothing but... I literally cannot.Whenever I am alone in bed I feel absolutely MISERABLE. I want to at least use my phone or talk to my Mum, but I literally feel like I can't because I'm scared of PEM. Please help..

    I also can't sleep which wouldn't help, which would at least allow me temporary release out of this prison. I keep looking at my clothes and how I used to go out in them and be a normal teenager... help.. my whole life is being buried.. I also have a weird phobia of blood clots
     
    Mel9 likes this.
  2. Diwi9

    Diwi9 Senior Member

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    @Puppyoongis - Pacing is not an accurate art...it's really just a rough guide to not expend energy stores. I've heard that one must decide what their energy level is and only use half of it. Some people use timers, i.e. 10 minutes of activity and 1 hour rest...whatever seems to work for the individual and it takes time to figure this stuff out. I have learned to just break up my activities and I use a Fitbit to get a sense of how many steps I've taken and to make sure I don't raise my heart rate.

    I tend to feel better later in the day, so I don't really think about doing activities until later in the day. When is your "best" time of day? I'm in bed about 20-21 hours per day, some days more, some days less...and it sucks, but it is so much better than the alternative: PEM and more frustration.

    There is a thread on here about which supplements help reduce PEM symptoms. I still get PEM, but since I have been working on finding supplements and started low dose naltrexone, the depth of my PEM is not as severe. Some people use Alka Seltzer Gold. I use supplements like creatine and amino acids. Everyone is different.

    When is your appointment with Dr. Myhill? Have you purchased her book? She offers it in an e-book format.
     
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  3. *GG*

    *GG* Senior Member

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    1st, welcome to the Forum!

    Sorry to hear of your situation. You might want to share what Country you are in, if looking for some info on Medical possibilities.

    So you suffer from PEM from talking on the phone even for short periods of time?

    I think getting more restful sleep has been a great contributor in my getting better! Do you take any Medication or supplements for that?

    You talk about being miserable in bed, do you suffer from a lot of pain?

    GG
     
    Diwi9 likes this.
  4. Diwi9

    Diwi9 Senior Member

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    Shoshana likes this.
  5. mrquasar

    mrquasar Senior Member

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    And is your dog named Titan? If so, be very careful not to leave any maps laying around on the floor :p
     
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  6. Puppyoongis

    Puppyoongis

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    I'n getting a cat in a few weeks!!!! But the thing is, I'm in the UK and we have no way of getting to see Dr Myhill as she's all booked up. We instead got her book and are using her guide and suggested supplements to get better, but there are so many different methods it's daunting. I just took a low dose B6 B12 vitamin while waiting for my real higher dose one to come and I feel so much better!! I hope I get some sleep tonight. I'm lucky in that I have no pain, just a lot of heart palpatations and sleep apnea...
     
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  7. UKmum

    UKmum

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    Hi- Have you tried audio books- can be restful and help the boredom. You tube reigns in this house for the lying down hours. Not sure I get the watching other people play games but seems to entertain my 16 year old. He started off with very limited screens but there is a difference for him between gaming/interaction- high activity and just watching you tube which doesn't seem to take much energy. Every one is different so hopefully you will find out your low level activities soon. Cat sounds great- will it be a kitten or an older cat? We have cats and they are great lying down companions.
     
    Little Bluestem likes this.
  8. PatJ

    PatJ far and free I gaze

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    I learned a lot from Erica Verrillo's CFS Treatment Guide.
     
  9. Diwi9

    Diwi9 Senior Member

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    @Puppyoongis - I'm so excited that you are getting a cat :cat:!!! Animals are such good companies and they like to sleep a lot, so hopefully your cat will curl up on your bed with you.

    Yeah for getting Dr. Myhill's book! It was a starting place for me. This site has a ton information too. If you have a symptom or you are curious about a supplement/treatment. Just use the search function and you will likely find a thread on it with people giving their own experiences. I have found that many things helpful to others don't work for me, but as I kept trying different things...surprise...something did, and what a relief it is to find some improvement...like you just did with B 6 &12 :)
     
  10. Little Bluestem

    Little Bluestem All Good Things Must Come to an End

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    Have you tried using your phone or talking to your Mum to see if/after how long it gives you PEM. One episode of PEM isn't going to kill you. You may need to do a little experimenting to find out what and how much of it you can do. I find I can listen to the radio and CDs (yes, I am a lot older than you), but not read.
     
    Last edited: Apr 6, 2017
    Diwi9 likes this.
  11. Shoshana

    Shoshana Northern USA

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    HI Leo,
    Great to see you here!

    Phobias are not weird.... it is easy to think of something like that, when so much feels unknown and so much time to "think."
    Clots would be very unusual for your age, though.
    I am glad you are getting a kitty!

    I wonder if trying out listening to a little music, that you can close your eyes, during it, and just dream (awake) about being in the music.?? (Not loud music!)

    I agree with above post, that you might need to try some very small gentle stimulations, to see if there is a wee bit of distraction you could get, without the PEM being TOO big. Risking some PEM, is not the worst thing possible.
     
    Diwi9 likes this.
  12. Diwi9

    Diwi9 Senior Member

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    Good call @Shoshana!

    I sometimes listen to Delta Wave music:

    Or Alpha Wave music:

    They help me calm anxiety and distract from pain.
     
  13. Shoshana

    Shoshana Northern USA

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    Or sounds of gentle weather..... I can close my eyes and imagine I am feeling the raindrops.... or that i am watching the stream ripples.....nature sounds?
    Whales makes gentle calls.
     
    Izola likes this.

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