Well, that didn’t work.

I crashed and burned about four hours after writing the last post. Unfortunately, the Phoenix is still only a small, guttering ember and a tiny wisp of smoke. The remnants of stamina and energy once too big to be contained. If I ever thought that I could will myself out of illness, yesterday and today were brutal reminders that it doesn’t matter how rigid my resolve, how deep my desire, how hardcore my hope…my body is in charge of my destiny. My mind is a hapless, helpless passenger. A gagged, straight-jacketed observer, along for the ride.

I am writing this carefully in bed while the dark room spins around me. Grant me the serenity to accept the things I cannot change.

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33 thoughts on “Well, that didn’t work.

  1. Jenny Bolton says:

    It’s amazing how you can restart a roaring fire from the smallest ember.

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    • E. Milo says:

      Jen, that comment made me grin and made my chin quiver at the same time (which made for a funny face). I didn’t even know you were still reading! Thank you so much for this. The most simple and forceful thing you could have said. I’m so grateful to have family rooting for me. xoxo

      Like

  2. BONNIE JOHNSON says:

    YES–WE ALL LEARN THIS HARD, UNFAIR TRUTH, EVENTUALLY! GOOD TIMES, NOT SO GOOD TIMES–I’VE HAD MANY THESE LAST 11 YEARS. FEEL BETTER, SOON.

    Like

  3. Jackie says:

    While you may not be able to will yourself back to full health, your positive attitude does make a difference in your over all health and well being. Did you know pessimists tend to die younger than optimists? I know that at your core, you know your positive energy makes a difference, but sometimes I need the reminder so I figured you might be the same.

    I know what it is like to feel completely powerless and discouraged and I am so sorry you’re going through those feelings right now. It’s the worst. You just want to scream, you want a break from your body, you want someone who can tell you “why”. I think you should consider allowing yourself to have some much deserved “why me” time. Basically, the person you once were has died for the time being. Grieve for the loss of this person you knew and loved, it is only natural. Wallow, cry, feel sorry for yourself, and before you know it, I predict your generally positive outlook will kick back back in and you’ll be back at it. No one expects you to fight every single day. I’m here for you if you need to vent!

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    • BONNIE JOHNSON says:

      VERY NICELY SAID, JACKIE & THANK YOU!

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    • E. Milo says:

      Jackie, I was watching the tv program Sunday Morning and they had a segment on the science of resilience. They talked about studies of PTSD in war veterans and people who had gone through surgery/ emergency trauma and said that the ones who came through these things fairly unscathed – even POWs – were the optimists. It made me think of you. I never thought I was a pessimist, but maybe a realist… Maybe not an optimist… This illness made it virtually impossible to stay optimistic, but that’s my goal – that’s what I work at every day. The good news is I really never do the Why Me? thing… I never have. Why not me? And, looking at my past, OBVIOUSLY me! Thank you so much for being there for me. I know you have been through the wars and maintained your optimism, so it’s great to know your energy. X

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      • BONNIE JOHNSON says:

        I LIKE!! I CALL MYSELF A REALIST–SOMEONE HAS TO BE. I’M THE HALF EMPTY PERSON BUT THERE’S STILL WATER THERE. MY HUSBAND IS THE HALF FULL, BUT I CALL HIM A ”POLLYANNA”. WE CAN BE POSITIVE TO THE POINT OF NOT WANTING TO ACCEPT REALITY. WE HAVE TO DO THAT IN ORDER TO SEE THE NEED TO CHANGE THINGS!

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      • Jackie says:

        Okay, this isn’t going to be all lovely and cohesive. Just a fair warning!

        Aww that was sweet, thank you! I’m all about energies lately and I love yours and am happy to know yours too.

        Maybe a “why anyone?” day would be best of all for you.

        To me, optimism doesn’t mean you always see the good in every single thing, it means you don’t let the bad things consume you or keep you from seeing good things going on aside from the bad situation. For example, a dr I quite like once told me how lucky I am to be sick in 2013 because 100 years ago they couldn’t have done much of anything for me. Uhhh, yeah, no thanks, I am not on board with that thought process! I’m not lucky. I may be fortunate, I have what I have instead of something more painful or deadly, but not lucky. To me, optimism is knowing this isn’t for forever and finding humor in a cruddy situation and feeling I will figure it all out someday and even though I am sick, enjoying life rather than being a grumpy butt… but it isn’t pretending I somehow think my situation is for the best, enjoyable, or fun. Your blog has shown me you do the same even if you don’t realize it! Anyways, that was a tangent, but I am leaving it! 😊

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  4. I just did the same thing. I went out to dinner, walked to a couple of shops, and did a little grocery shopping. I am now in the hospital for a few days in serious shape. I am on fluids, magnesium and a couple of other new meds. I haven’t had solid food since last Friday.

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    • E. Milo says:

      Oh I am so sorry you are in the hospital! I hope you are out by now and feeling a bit better. How dare we leave the house and try to do some shopping… Such cruel payback. Sending you healing thoughts.

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  5. dawnhosking says:

    Take care and rest easy πŸ˜‰

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  6. I continually tell myself “do not try to control what can not be controlled” as in let the storm ride out, focus on tomorrow, the better days, they will come. Also, I’ve become a split person, there is my mind, fully healthy, alive and kicking and then there is my body, the useless appendages, unruly teenagers, refusing to comply with my resolve. But my mind remains, my resolve remains. I often tell people when asked after my health “my body is the same but my mind is good”. If we can keep half of ourselves good then the other half will follow in time. Wishing you a better day today. xx

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  7. Curiosity says:

    It’s an unfair, awful lesson, and I’m sorry it’s hitting you right now. I think it’s human nature to feel like if you want something badly enough, and you just try hard enough, that your body should respond for you. It’s such a powerless feeling to realize that some of our limits can’t be bent no matter the situation. I’m sure all of us with this illness have slammed into that. I feel for you.

    I hope you have some relief soon. It sounds like your body is really struggling lately. Give yourself whatever peace you can to let it recover some. I’m thinking of you, and sending you all my best.

    Like

    • E. Milo says:

      Thank you for those thoughts, Curiosity! I’m feeling a little better the last few days. It is unfair – I’ve spent so long feeling despair and disbelief at this situation, that I thought, when my brain suddenly glowed with absolutely certainty that the core of disease had lifted and I stopped guarding and being careful, I would realise that my body was able to accomplish so much more….. I have a very high regard for the power of my mind… I can do whatever I put my mind to, right? Nope. 😦
      Thinking of you, as always. Hoping you can write again soon. X

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  8. Amen to that! I was just thinking unhappy, angry thoughts about the horrid unpredictability of this wretched illness myself … I hope the Phoenix can rise again, even if only for a short flight. πŸ™‚

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  9. Christine says:

    Remember, the phoenix has to die before he/she is reborn, bigger and “badder” than ever. So right before that upswing, that bird’s going to look and feel like hell πŸ˜‰

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  10. bertieandme says:

    I’ve had M.E. for 20 yrs so am an old hand so to speak πŸ˜‰ I was bedridden for the first 6 yrs and tried everything to get well – it wasn’t going to beat me!! Only it did. I just stayed sick. In 2000 I decided if this thing was going to kill me it just needed to get on with it. I stopped fighting it, stopped trying to find a cure (there isn’t one) and just allowed myself to be sick while at the same time taking good, simple care of myself. And that’s when I started to get better……! I’m not well, but I’m no longer bedridden. Be kind to yourself x

    Like

    • BONNIE JOHNSON says:

      YES–I AGREE–I SPENT $1000’S UNTIL I HAD NO MORE TO SPEND. THERE IS NO CURE & WE STILL DON’T EVEN KNOW WHAT CAUSES CFS/ME. HARD TO TREAT IF U DON’T KNOW WHAT U R TREATING!! SO, I PREFER TO SAVE THE LITTLE ENERGY I DO HAVE; GOING TO THE DOCTOR TAKES A LOT. I HAVE A FEW THINGS I HAVE TO TAKE FOR PAIN–I USE NATURAL, PURE ESSENTIAL OILS AS MUCH AS POSSIBLE–I’D USE MORE IF I HAD THE MONEY. I HAVE ARTHRITIS IN BOTH KNEES & HIPS WHICH MAKES THINGS WORSE; I DREAD THE DAY SURGERY MAY BE UNAVOIDABLE ANY LONGER! SO GLAD NEITHER OF US IS BEDRIDDEN, BUT IT’S STILL A STRUGGLE TO TAKE ”GOOD CARE” OF YOURSELF WHEN SICK!! I NEED A LIVE IN CAREGIVER, LOL. BJ.

      Like

      • E. Milo says:

        I want to be a multimillionaire and fund caregivers for all the housebound and bedbound patients. Oh, to not have to worry about laundry, cooking, cleaning! It’s more than a full time job for the chronically ill. I, too, worry about having to have surgery one day. I hope you stay out of pain for years to come!

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      • BONNIE JOHNSON says:

        THX. I’M HOPING MY HIPS & KNEES OUTLIVE ME! LOL. I PLAN TO ONE DAY MEET THE LORD IN THE SKY–NO MORE PAIN OR SORROW!! LET ME KNOW WHEN U GET YOUR MILLIONS, THO. WOULDN’T THAT BE AWESOME??

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    • E. Milo says:

      This message brought a tear to my eye. I didn’t realise you had been fighting ME for that long. And you’re so young! Thank you for the words of wisdom. I will try to relax, but wonder if I’ll ever stop fighting this (permanent) condition. X

      Like

  11. Sue Jackson says:

    That is the absolute hardest thing about ME/CFS – learning that you can’t overcome it by pure will. No matter how strong you are emotionally or how hard you try, you just don’t have control over your body – a very hard lesson for me to learn (I am still working on it, after 11 years!). Even worse, there is a large percent of the general population that DOES believe you can overcome anything if you work hard enough – I probably used to be among that number myself!

    Sorry you are going through such a bad period – I hope you are feeling a bit better by now – rest and take care of yourself!

    Sue

    Live with CFS

    Learning to Live with CFS is now on Facebook!

    Like

    • E. Milo says:

      There is part of me that really, TRULY thinks I should be able to heal myself by focusing intense mental healing energy into my cells every day and deciding – BELIEVING- that the stars have finally aligned to allow me to arise… Feeling a bit better now. I know you were in a long slump, too, so I hope you are feeling better, too. Thank you for the comment, Sue!

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  12. Claire says:

    It must be time for change – I’ve just gone through a transition period too; for some reason I had it fixed in my head that I’d be well by now. Accepting that I’m not is hard. (I wrote about it on my blog) But I believe that I will get well again – I think with CFS you need to learn to go slowly and not struggle. The push/crash cycle is so difficult to get out of and once you do improvement is so slow – but it’s worth it!

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