Review: 'Through the Shadowlands’ describes Julie Rehmeyer's ME/CFS Odyssey
I should note at the outset that this review is based on an audio version of the galleys and the epilogue from the finished work. Julie Rehmeyer sent me the final version as a PDF, but for some reason my text to voice software (Kurzweil) had issues with it. I understand that it is...
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plan for no cure and hope you're wrong

Discussion in 'General ME/CFS Discussion' started by Bander, Nov 22, 2017.

  1. alkt

    alkt Senior Member

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    wisdom unfortunately has a very high price. I think I would rather be a fool than gain insight through this or any other chronic disease.
     
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  2. Diwi9

    Diwi9 Senior Member

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    Pibee - Your post is so sad, and yet so familiar on these boards. We have so little evidence that is digestible for the mainstream. Given your particularly bad familial situation, showing the movie "Unrest" to your mother may help. There is a woman featured on the film, whose husband left her because his family convinced him it was the best thing since his support of her was only allowing her to be ill. Later, their daughter came down with ME/CFS, at which time he came to believe it was a real illness. He returned to his wife and committed his life to trying to right the wrongs he had done to her.

    Hugs to you, Pibee :hug:
     
  3. helperofearth123

    helperofearth123 Senior Member

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    That sounds very unusual for ME/CFS. If it wasn't an allergic reaction what else could it have been other than as you say - bugs being killed? Not tempted to try a longer course? Not saying its worth the risk but that if theres an infection there its got to go somehow.
     
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  4. pibee

    pibee Senior Member

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    I did 2 years of abx, on off, i got rid of neuopathies, Bells' palsy, some psychiatic.symptom.. but initial hex in 2014 trigged, what i now think, is autoimune response, so made my 'ME' wo rse... latest test for lyme is negative.. this summer I got IV, was quite better and then later much much worse... now antivials stopped my big progression of ME.. so seems like it all just makes me wo rse..i didnt have viral symptoms before abx
    if you want more details, send me message so we dont make this Lyme thread.
     
  5. kikala

    kikala

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    I'm really appreciating this thread. The news that Rituximab isn't the treatment we've dreamed of is devastating. I have been sick for 27 years, and find that my perspective fluctuates with the degree of my illness. The first 2 1/2 years of being sick were so awful, mostly because I was constantly so sick, but also because I was SOOOOO angry about losing my life as I knew it. I would read advice about pacing myself and accepting how things were and would lose it. Just so furious and so full of loss and grief. So if I rest for 10 hours a day maybe I can visit for 20 minutes? Really??? That's the most I can hope for?

    After about 2 1/2 years I began to have some periods where I wasn't as crashed, and this corresponded with having a little bit more acceptance and appreciation for what I still have. I grew to feel like I could handle the limitations (sleeping and resting much of the day, not doing anything too physical) if I could just feel relatively OK within those constraints.

    Acceptance is a funny thing. You can't really will yourself into it, any more than you can will yourself to get well. When I am more accepting, it's great. But when someone tells me I should be grateful for what I do have, or I feel pressured to accept this life, I just feel worse. And after all these years, I have what I call my "line." It's a very physical line. When I feel above it, I of course still sometimes feel grief and loss, but I also feel gratitude and appreciation for what I do have and can do: hang with my kids, lay outside in the sun, watch a good movie, all while feeling, well, not well, but not feeling so consumed by being sick that I can't enjoy anything. When I'm terribly crashed and below the line, well -- it's really just about surviving the suffering. Being above the line I'm able to feel lots of different feelings, both positive and negative. Below the line -- I'm just getting through, waiting for things to ease a bit. When I'm below the line for too long, I just completely sink emotionally, and honestly, in that state I could no more feel acceptance than I could "accept" being run over by a train.

    What I try to hold on to is compassion for myself, whether I'm above or below the line. When I'm below, I'll sometimes think compassion doesn't matter, because I still feel like shit, but when I'm feeling a little bit better, I know it does. I so agree with many of the writings... we all do what we can to get through the horror of this illness.
     
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  6. Diwi9

    Diwi9 Senior Member

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    @kikala - I really appreciate your post. This describes me perfectly and your words express my experience better than I am able to at this point in my illness. Thank you.
     
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  7. char47

    char47 Senior Member

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    You make a very good point, I'm 50 with other health issues, family history of early death due to heart disease (& they were all very fit & healthy previously - plenty of exercise etc!), & no money to try anything non NHS funded for myself, so the outlook, the reality, for me for me is a little different. I think thats a crucial point really that each of our realities is different & so healthy response to each one needs to be different.

    Good luck with the antibiotics if you go ahead with them.

    haha yes it's a little british bird :)

    You are so right kikala. I think generally 'shoulds' are bullies, & no one gets to tell someone else, or even ourselves how we 'should' be handling it. You cant just decide to feel anything & trying to is so unhealthy imho.
    I didnt decide to, it's what came naturally at the other side of grieving & as you say, it's a fluctuating animal.



    I'm going to ETA my original post to say the following (just in case of new readers). My story should NOT be misinterpreted to mean that i think that anyone should 'learn to accept it', or whatever.
    I didnt grieve with acceptance in mind, I dont think you can 'decide' to accept it... indeed who would want to make that decision?!
    So IF there was any message at all from what i've written it would be that i hope people will be compassionate enough towards themselves to let themselves feel however they actually feel. I had felt tremendous pressure (from myself & others) to be 'positive' before, to be 'not giving in to it', not letting it 'get me down', and it was tyrannical. And unexpectedly what i found was that in telling all that to f*** off & letting myself descend into the hell of grief, feeling how i really felt & facing my worst fears, was that afterward the acceptance came unbidden & unexpected.

    If feeling like "f off i dont accept it & never will" feels right for any of you, then i applaud & support you in that:thumbsup:.
     
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  8. Cinders66

    Cinders66 Senior Member

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    The severely ill have terrible quality of life and can still be young. Severe ME can be both a temporary phase and a chronic state (nor recognised enough) and most know if they might fall in the latter camp. For this group I'm in all we can do is push for funding, encourage research and push for treatments. I've never even dared to hope for cures for about twenty years, I know I'm too far gone to expect that, but I have to believe that something some form of treatment options as other illnesses have, can make me feel less ill and give me a better quality of life. AFAIC this is mainly being impeded by lack of research effort and cash. I'd rather advocates stepped up rather than gave up on this issue, which needs as many voices as
    Possible
     
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  9. char47

    char47 Senior Member

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    Oh absolutely Cinders66! Dont let me give the impression that accepting that i may well not recover makes me less motivated to advocate, protest etc, it most certainly doesnt. That would be resignation. No way.
    The very severe are living in a hell i can only imagine in fear, & i will continue to do all i can to fight for you/them, & in any case it's always possible for any of us to deteriorate so the urgency is still there for me.

    And in any case on a selfish note, just getting some recognition of the reality of what we're enduring, just being vindicated as actually being ill rather than having a faulty belief system would radically impact my (eveyone's) quality of life & experience of being ill, such that even without a cure, at least we'd get some proper care & respect & wouldn't have to be frightened to go to the doctor!
     
    Last edited: Nov 23, 2017
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  10. TenuousGrip

    TenuousGrip Senior Member

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    As I often say (forgive me, non-native English speakers): there is a difference between surrendering and giving up.

    I've basically surrendered but I haven't given up.

    To "stop actively fighting" is to surrender but it is NOT to give up. It's just taking a different approach to the battle ... maybe working on something different.

    If I were stranded alone on an island I would always be seeking rescue. At some point, though, you have to do anything and everything to improve your dire circumstances (food, water, shelter, etc) ... or you will die.

    Maybe some of these posts speak to this, too.
     
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  11. Sandman00747

    Sandman00747 Senior Member

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    Such a well written and beautiful post kikala! I am a horrible person if I am below that line you mention for too long. I think being below that line is the nightmare for most all of us. I am over 20 years with this and have never learned how to live below that line with any kind of grace. If anything that brings out the beast in me with this illness. Again, such a wonderful insightful post. You took the words right out of my keyboard!
     
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  12. cmt12

    cmt12 Senior Member

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    Above the line is ‘order’ and below it is ‘chaos’. Humans have divided the world between order and chaos for much longer than we have been thinking scientifically. The advantage of abstracting out to the level of order/chaos is that we can see patterns, make connections, and apply wisdom that has stood the test of time. Asking ourselves how we should deal with chaos gives us possibilities that asking how we should deal with a CFS crash doesn’t.
     
  13. lior

    lior Senior Member

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    Loving the relating that's going on in here :)
    I haven't been daring to look too far in the future very often. I like this way of looking at it. I hope I'll be better in a year or 3 years. Considering my gradual, slow improvement, this might be possible for me.

    Very true. I've been through other life stuff which has given me painfully hard-won wisdom. I've had people act admiring of that, but really they're the lucky ones. I don't wish the stuff I've been through on them. But since this is the package of life that I've been given, I have to find what I like about it.

    Interesting perspective. 27 years... you really know what you're talking about! Lol maybe acceptance is like especially good sex. You can't predict when it's going to happen. You can set it up, but you can't force it. There's no guarantees. But sometimes it happens and it's amazing. No? Haha.

    Self-compassion - I really think that's a magic ingredient.

    Loving this line idea. It's great that you can feel that line. I'm still figuring out where my line is. I've been ill for 14 months.

    Me - I want to accept it. I know that if I don't, it would be a threat to my mental health. I was suicidal 2-3 years ago. I'm dedicated to the max to stay mentally well. Accepting that this is what my life is like is the right path for me. I'm not totally there yet... I'm still in denial about my limits... but I feel that coming to terms with them will be right for me. So far, the process of getting there is making me feel more calm, too. I also reckon that accepting my life and limits now will take my stress levels down to a minimum, which will help with the severity of the symptoms.

    I agree that 'shoulds' are bullies!! I'm still tuning in to when I end up telling people and myself a 'should' - I don't want to do that any more. Instead, I explain what works for me, without telling anyone else that they 'should' do the same. Everyone finds their own way. We can learn from each other's experience - we can inspire each other, and empathise with each other - so being open about our struggles is good for both you and me. I still have to work on noticing when people tell me I should do something... not having a cure and all the possibilities of self-experimentation makes me feel at sea, and with that desperation, it's easy to believe someone who seems to have the answers.

    I'm not sure if I agree with you on not trying to feel something. If I didn't open myself up to joy when I was depressed, I might not be here any more. I don't deny the emotions that I have, and I don't repress them when they come up. I don't force myself to act as if I'm happy. But I do actively work towards feeling good, and I make the mental space to reflect. I process difficult feelings and I draw my attention to good things too. I like having a method/attitude/approach to work my way into more healthy, happy emotional states.

    Argh sorry out of energy and can't check this... sorry if I sound like a w***er...
     
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  14. char47

    char47 Senior Member

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    Oh i agree completely with what you say here lior. I'm sorry i wasnt clear when i said 'who would want to accept it', it's ambiguous....
    what i meant was more like 'who would want to have to accept it....'
    I mean I feel acceptance is a healthy response, & having had that experience unexpectedly it's now what i work towards in other areas of my life. But i still would rather not be in a position of having to accept being ill, no one wants to be in the position of having to accept something so awful.
    We'd all rather there were something healthy we could do to fight it & win - that's why we wish their were effective treatment. Who would choose accepting/coming to terms with our limits if there were a simple & effective way of getting rid of them? Thats what i meant.

    I'm entirely with you. For me 'opening yourself up to' other feelings & drawing your attention to happier things isnt what i meant by 'trying to' feel them. It's giving yourself the opportunity to feel them when possible. When i said you cant 'decide' to feel anything & 'trying to is unhealthy', I meant forcing yourself to feel, or at least trying to force it, which of course does involve either smothering/supresssing/repressing one's true feelings or dissociating from them in some way.... thats what i meant. ....

    So for example years ago when i thought that being "positive" was the 'be all & end all'....
    if & when i felt something uncomfortable (- intense anger, grief etc), I would simply 'decide' not to feel like that, which i now know involved repressing my feelings/dissociating, & i would basically bully myself into being 'happy'. And if you dissociate from the part of yourself that's grieving it is possible to do that, but it comes at such a high cost.
    It was very unhealthy & did me a great deal of harm. & so it really irritates me when people (not people here, just in general i mean), when they promote that kind of thing with comments such as 'happiness is a choice'/'decide to be happy' - as if one could (healthy) just flick a switch in our brains & bring on the emotion we choose.
    We can, as you so eloquently described, open ourselves up to it, we can look for it, work on our external environment (where it's under our control) & work hard on processing our feelings so that we give ourselves any & every oppotunity possible to be happy. We can do all that you mentioned (which sounds incredibly healthy to me, i take my hat off to you!), but trying to force ourselves to feel happy when heartbroken, or accepting of something when we are enraged about it, (or indeed disallowing any of our feelings), is toxic (imho). It's that behaviour/attitude i was referring to when i said it was unhealthy to 'try'.

    I guess what i really meant was while we can decide to do our best to work towards feeling certain things, & thats great. But trying to just 'decide' to feel anything by over-riding what we do actually feel is unhealthy.


    sorry for rambling, the 'succinct' button is missing from my brain :rolleyes::redface:

    Also lior, i'm sorry to hear of your experiences with depression. I really admire & respect both your approach & all the commitment & effort you're putting in to your mental health.
     
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  15. lior

    lior Senior Member

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    Aw thank you so much @char47 <3

    Turns out we think v similarly then... but we're both struggling to communicate it! Haha.

    My best friend does what you did. Even after these years of seeing me process the hard stuff, she still believes that being negative in any way is ugly, and she represses even the basic negative stuff. She has changed a bit - she lets herself get angry at injustice from other people towards herself now - but she finds it so challenging to hear me talk about the hard stuff that she sometimes doesn't believe me. Now I understand that, I'm a bit more careful about what I say to her.

    Conversely, I tell her I admire her when she opens up to processing difficult feelings. She is prone to anxiety and indecision but she isn't tackling it head-on yet. I'm going to be for her when she eventually does.

    Sorry... off topic. I'm somehow DOING stuff today, but with embarrassing mistakes, and I keep getting distracted. I don't want to stop because I like being able to do stuff. Cue inevitable imminent crash.
     
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  16. fingers

    fingers Senior Member

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    A good thread, some great posts.
    I'm 26 years into the journey, approaching 50% of life without (pre) ME, 50% with it.
    If I live to 100 - which I plan to because I'm gonna crack this fucker if it kills me, lol - then it will be 33% without ME, 66% with...approx.
    Have only scan read the posts, so forgive me. I have two points to input:

    1) ME can be a gift because we do have to stop rushing around, have time to reflect, do other things...learn to be compassionate

    2) I don't think that the case has been closed on the retroviral theory, I'm gonna hang in a bit on that one for a while.
     
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  17. TJ_in_UT

    TJ_in_UT

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    Several months ago, I came to the realization that I may never heal to the extent that I wish. It was a heartbreaking insight, yet healing in its own way. Here's what I mean by that:

    Many things in life can't be changed, until they are first accepted as they are.

    Accepting the fact that I was sick right now and that it was possible that I'd never get better -- that this might even be the best I ever get -- was a catalyst for healing. It was typical for me to live in the future, thinking about what I was going to do when I was well, but that kept me from having a full awareness of what was happening in the present.

    This is not an illness for which we can expect a doctor to fix us. An illness this complex has many contributing factors, like compromised gut integrity, pathogen infections, upregulated immune reactions, years of poor dietary choices, food sensitivities, nutrient deficiencies, etc. There is no magic pill, no "one solution" to our problem, because our problem has many synergistic causes. For us to heal, we have to live in the present, become aware of what we need to work on now, and do it.

    I am now getting better. :) I may not heal to the full extent I desire, but I am better able to appreciate what I have here and now, and better able to enjoy whatever improvements I may experience, great or small.
     
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  18. redo

    redo Senior Member

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    Hear, hear. Your post made me think of this Dickinson poem, which gets the gist of what I feel about hope.

    “Hope” is the thing with feathers -
    That perches in the soul -
    And sings the tune without the words -
    And never stops - at all -

    And sweetest - in the Gale - is heard -
    And sore must be the storm -
    That could abash the little Bird
    That kept so many warm -

    I’ve heard it in the chillest land -
    And on the strangest Sea -
    Yet - never - in Extremity,
    It asked a crumb - of me.
     
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  19. cmt12

    cmt12 Senior Member

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    I have a feeling some are reading the phrases ‘acceptance’ and ‘surrender’ and thinking those actions can’t possibly be helpful in moving toward a better state of wellbeing. It also seems clear that there are some people using those words and they feel that accepting and surrendering is useful in some way, but the idea of surrendering to a life sentence of CFS is not quite what they are trying to communicate. I’m going to attempt to clarify.

    I understand many put their hope into the possible potential of this Rituximab treatment. I also understand there was some negative feedback that has dashed that hope. When this happens there is a loss, and the best way to respond to this loss in order to most effectively move forward without giving up is to accept and surrender to that sense of loss. This allows us to reaccess the hope we need to persist.

    Our wanting to give up and conclude that a cure is not possible is a consequence of resisting the process of surrendering to and integrating the loss. If we stack up too many of these losses without feeling them fully and completely processing them, then we will lose hope entirely.

    Internally, we have two conflicting viewpoints of how we should act: we’re being encouraged to ‘accept’ and ‘surrender’ to the loss so that we can become hopeful again and continue the journey, but the resistance — not wanting to engage the pain of the loss — is urging us to just give up on the entire thing.

    These two actions can get entangled into one and we may interpret it as we need to ‘accept’ and ‘surrender’ to the idea that we will never be cured, which seems to be what is happening in this thread to some degree.

    I’ve come to realize that a key aspect in making progress is to be able to persist. This means integrating the losses so that we are able to not only regain hope but also extract the wisdom we need.
     
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  20. neweimear

    neweimear Senior Member

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    So well said, I agree wholeheartedly. Thank you for posting.
     

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