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wow this is getting tough for me

Discussion in 'General ME/CFS Discussion' started by Johnskip, Mar 22, 2017.

  1. Johnskip

    Johnskip Senior Member

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    I got 3 small kids just finished cleaning up after them worked about a half hour around the house all out of breath like feeling can't see real good eyes bothering me neck killing me this shit is crazy
     
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  2. jpcv

    jpcv Senior Member

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    lay in bed , drink lots of water. Keep going, never retreat, donĀ“t precipitate.
     
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  3. Johnskip

    Johnskip Senior Member

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    thank you I am very headstrong I want to exercise i dont care how fatigued I am but of I push to hard I'm finished where I can't push through this is my dilemma! I'm very frustrated
     
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  4. alex3619

    alex3619 Senior Member

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    The wide anecdotal experience is that pushing through results in steadily progressing decline until you reach some point you have to stop it entirely, even if you don't want to. This is similar to the concept of rock bottom in addiction. Some patients do not stop before they can not get out of bed at all, or experience a sudden decline that pushes them into that.

    The usual management strategy for me is to do things in very small bursts. For me that is two to three minutes. This is followed by adequate rest. This is part of my pacing strategy.

    Some doctors such as Nancy Klimas have experimented with having patients do supine exercise for seconds to minutes with much more rest between sets. I do not know if anything is published that shows this works.

    Researchers from Workwell have seen patients try to improve their aerobic conditioning. After lots of training their aerobic capacity is worse. Instead they focus on trying to maintain some strength and flexibility. They find that even that little amount takes much longer than expected. Gains you might expect in weeks take months.
     
    Last edited: Mar 22, 2017
  5. Countrygirl

    Countrygirl Senior Member

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    I am so sorry to hear what you have to cope with. I cannot imagine how you manage with three children with this illness. What I do know is that if you push yourself, you will worsen your condition, potentially permanently.

    It is crucial to be able to 'pace' yourself. You do need help in what ever form with your children. I sincerely hope there is a way for you to achieve this.

    You need rest. It is not negotiable.

    Very, very best wishes. I do hope you find help.
    C.G.
     
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  6. *GG*

    *GG* Senior Member

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  7. anciendaze

    anciendaze Senior Member

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    @Johnskip, @jpcv

    While maintaining hydration is important, make sure you also keep electrolytes balanced. If exercise will cause me to sweat I take a Salt Stick capsule first. Because it takes time for these to move into your bloodstream you probably will not be able to fix such a problem after it appears. You will be down for hours, but you will not experience as serious a crash. The thing that clued me in about this was the similarity of my episodes of weakness to a hangover. (N.B. I don't drink alcohol at all, after very unpleasant experiences long ago, but people who heard my symptoms thought it sounded exactly like that.)

    I do not have experience with their Vitassium formulation. Does anyone else?
     
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  8. mango

    mango Senior Member

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  9. Cheesus

    Cheesus Senior Member

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    I really urge you not to cultivate a mentality whereby you want to simply push through things and resist the disease. A lot of people on this forum started out that way, and I can guarantee you that the ultimate conclusion is that a gentle approach to activity is more effective.

    The harder you push, the harder it will push back. I admire your strength of will, but you won't be able to face down a crash by strength of will alone.
     
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  10. Johnskip

    Johnskip Senior Member

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    you are 100 percent right appreciate I really don't know if I can do it just being honest I already pushed through limits I can't believe I'm alive
     
    Last edited by a moderator: Mar 22, 2017
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  11. Countrygirl

    Countrygirl Senior Member

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    I had that attitude as did many of us. It landed me in a nursing home. Never recovered.

    Unlike other illness, the only way you can 'win' is to give into it and REST! The consequences of not doing this are severe and may well be permanent. It is not worth it.

    Really!
     
  12. Cheesus

    Cheesus Senior Member

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    Everyone here can empathise with you. People who have been ill for decades still crash regularly. It is particularly difficult at the beginning; I can remember pushing so hard I had a small seizure (not that the doctors seemed bothered by it). It is also very difficult when you start to feel a little better, because you start thinking you're invincible and can handle anything, so you take on orders of magnitude more than your small lease of energy would have naturally allowed.

    Don't beat yourself up over it when you do too much and get a harsh PEM. Try to learn from those mistakes and congratulate yourself when you balance your activity well. Pacing is tough and it is impossible to do it perfectly.

    We'll be here to offer support and advice. You're not going through anything that the people on this forum haven't dealt with, so you can rest assured that advice is backed up with a wealth of experience.
     
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  13. Cheesus

    Cheesus Senior Member

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    I am sorry to hear that, Countrygirl :( We'll break you out of that place, if it is the last thing we do!
     
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  14. Sushi

    Sushi Senior Member Albuquerque

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    Thing is, it is a much worse dilemma if you tip yourself over an edge and can no longer take care of yourself. Many here have done that--see below.
     
  15. Countrygirl

    Countrygirl Senior Member

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    Ha! @Cheesus . Thank you! However, my pennies ran out and I had to leave and return to my own bed at home.

    Mind you, if my doc gets her way I shall be attending a fatigue clinic who are partial to sectioning their ME patients as they can't understand why they are so ill. IF that happens to me please arrange for the ME underground brigade to help me break out.
     
  16. Sushi

    Sushi Senior Member Albuquerque

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    The underground brigade is putting together strategies was we write.
     
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  17. Countrygirl

    Countrygirl Senior Member

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    Excellent news @Sushi. Phew! What a relief!

    Don't forget something to pick the locks, some ropes, (I have no heads for heights so could be a problem:nervous::depressed: ) and a fast car with a driver. Are we all up for that?

    Oh and I will need a safe house located out of the county to avoid pursuing social workers. (I have helped others in this predicament, so know the risks.)

    Much appreciated! Please rest up in preparation for the Great Escape should it be necessary.

    (The awful truth is that so many ME patients are in this terrible predicament including one shocking case I heard of today.)
     
  18. Cheesus

    Cheesus Senior Member

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    Make sure the plan includes lots of places that we can all sit down to take a break.

    @Countrygirl I'm not too sure about the getaway. My neurological sensitivity can't really handle the excitement of a high speed chase. Maybe we could smuggle you out with a disguise? Does anyone have a fake moustache to hand?
     
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  19. mirshine

    mirshine Senior Member

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    @Countrygirl if you can find a way underground to Dublin you can camp on my floor. They'll never hear you over my lunatic 3 year old. You can hide out if you can stand the over enthusiastic hyper noise of my little one!
     
  20. Sandman00747

    Sandman00747 Senior Member

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    I assume getting "sectioned" in the UK is the same as getting "committed" in the states, yes?
     
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