Julie Rehmeyer's 'Through the Shadowlands'
Writer Never Give Up talks about Julie Rehmeyer's new book "Through the Shadowlands: A Science Writer's Odyssey into an Illness Science Doesn't Understand" and shares an interview with Julie ...
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How to avoid getting worse

Discussion in 'General Treatment' started by AdamS, Apr 1, 2017.

  1. AdamS

    AdamS Senior Member

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    Hi all, I appreciate that there is no definite answer to this, but I wanted to know from your experience, what has helped you from declining further if anything? Or is a slow decline is just an inevitable part of M.E?

    I'm currently about a 4/10 on average on the EIPS/Lerner scale.

    Help is greatly appreciated :)
     
  2. Plum

    Plum Senior Member

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    For me there is a fine line between making sure I pace enough AND making sure I don't do too little. Over the years I have had relapses and gotten worse and then lost function. But it appears that I can now do a tiny bit more than I thought I could, without symptoms. But every day is a struggle of fine tuning and being very vigilant. I'm between 20 to 30 % functioning if that helps.
     
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  3. AdamS

    AdamS Senior Member

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    Super helpful Plum, thank you! Balance seems to be key. Out of interest, what were the main causes of relapse for you?
     
  4. Plum

    Plum Senior Member

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    I had 2 surgeries within months of each other. Spent a long time recovering. About 1 year ago I got a virus. Still recovering from that. About 3 years ago developed MCS which has permanently taken me down a step. I think the problem with things like surgery is you know you're not going to feel well so you rest a lot. And then months later I'd try to do a little more and crash so do even less and this just continues for ages until my body became unable to do much. It's very hard after surgery to know when your body has healed enough for you to do something like put some laundry on and not end up unable to move!
     
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  5. AdamS

    AdamS Senior Member

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    Ah I see, i'm sorry to hear that, sounds like quite an ordeal on top of an already brutal illness. Lets hope we can keep going until there is a cure.
     
    Plum likes this.
  6. Plum

    Plum Senior Member

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    Pacing PROPERLY has been the hardest thing for me to learn. I like being busy (even at this level of functioning - TV, puzzles etc) but it's been a long hard journey to learn that I need to lie flat and do NOTHING - if you can rest properly it can really help you claw back a little function / use your energy more wisely - hope that makes sense.
     
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  7. jlynx

    jlynx Senior Member

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    I'm not sure, I've had a progressive worsening the whole time I've had it. Now rather suddenly I feeling much worse so I'm going to get checked out to see if there's something else going on. Just feels like I might be missing something, or it's something new, who knows...
     
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  8. lnester7

    lnester7 Seven

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    In my opinion and particular cAse, if I make sure to give my body what it needs, i avoid decline, i used to get a lot diahrreah so absorption is an issue.

    I check my b levels, D and if I make sure I take good multi helps in my particular case. Also work on my leaky gut helped.

    I guess what I am trying to say, see what symptoms you struggle with the most, do you tend to be low on something so you address those. If it is sleep making sure you cover that..... the less stressors your body have, the best you will be. But the stresssors are different for each of us.
     
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  9. stridor

    stridor Senior Member

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    Your approach is important. Let me tell you a story that has impacted my approach to my health issues.

    I was just starting out with a young family and had an old 1979 LeBaron and I was trying to get it certified, all it needed was a horn. Save the easiest for the last, right?

    Sure wasn't hard to see what the problem was as the horn was a glob of rust. I drove 15 min to the wreckers and brought home a used horn. Didn't work, but that was OK as I then knew that it was the relay and took the horn back. Relay didn't work...but that was OK because I now had the problem narrowed down to the contacts in the steering wheel. But, I was wrong again.

    I had to step outside the box. Know what was wrong with my car horn? All three things. It took me 2 days to figure that out. I have applied what I learned to many things in life.

    For me, mercury toxicity was what upset the apple cart. But I also had to learn about methylation and that I was severely short of B12, Then I had to learn about Stealth Infections.

    Our poor brains...when we get sick we lock in on goals and certain treatments. Our brains just want to focus on one thing it seems. We are taught to think this way. We have Internists, allergists, psychiatrists, dermatologists and so on.

    It is truly a form of societal madness. We are integrated beings and only those who think that way will be able to help with multi-system problems.

    Otherwise, chelation of metals made me sicker before I got better. Firing up methylation made me sicker before I got better and so did going after the infections. But that is me.

    Stick with it though. You are a puzzle and you will figure it out in the end.
     
  10. Learner1

    Learner1 Professional Patient

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    Having appropriate nutritional support customized for my needs, especially mitochondrial and immune support, dealing with stealth infections, and reducing toxicity.

    Having a doctor who can think in 3 dimensions and will test and treat oddball things.

    And small, careful amounts of exercise to maintain strength, with naps during exercise period and ensuring I'm working at 80% capacity.
     
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  11. starlighter

    starlighter

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    I had a slow decline over many years until one morning I literally couldn't get out of bed. Was then very poorly for a good few years. Started to go uphill again with diet changes (nutritionally dense foods), cutting out gluten & sugar, supplements, probiotics and herbs. Rest, rest & more rest! Still having improvements but its slow going. Not bedbound or housebound anymore though.
     
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  12. TiredSam

    TiredSam The wise nematode hibernates

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    Last edited: Apr 6, 2017
    starlighter, Izola, Learner1 and 2 others like this.

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