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Hope: Double-Edged Sword or a Light in the Darkness

Discussion in 'Phoenix Rising Articles' started by Mark, Dec 9, 2013.

  1. Phoenix Rising Team

    Phoenix Rising Team

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    By Jody Smith

    Hope is essential - especially when things look darkest. And yet, when you're living with ME/CFS, stirring up hope can be the hardest thing to do.

    Hope can be a double-edged sword that can loosen your bonds, or savage you when you wield it. Having hope is no guarantee of success. Daring to hope can feel like you are setting yourself up for the possibility of more pain. And let's face it, you are.

    Fanning that wee flame takes the courage of a warrior. It takes a certain recklessness that can be in short supply when you feel surrounded by the darkness that is ME/CFS.

    As I'm hunkered down bracing myself for more disaster, raising my head can seem like the ultimate in foolishness. What if the good things I am setting my sights on never happen? I was broken before. Will I now find myself shattered into pieces, ending up in an irreparable state?

    Nobody can know the answer to this, when contemplating that courageous, and possibly self-destructive, move.

    When you can't get up from your bed, the idea of rising up can seem ridiculous. Maybe you've forgotten how. Maybe every time you've done it before, you've been slammed back into a worse situation than you were before.

    But without hope, what really do you have? And without hope, how will you ever have a chance of moving forward?

    That is the dilemma. There is no guarantee that hope will be fulfilled. But without it, I was almost assured of staying where I was.

    For a long time, I had no hope of things ever changing. One day dragged after another, each one dreary and heart-breaking. My waking hours of effort were spent on things like breathing and trying to stop the vibrating, the nausea, the whirling vertigo.

    Will I chance a shower? Is there a point to wearing myself out by getting dressed? Eat something. Sit in a chair, if I was lucky. Drag back to the bed when the interminable day is over. To sleep ... or not.

    To live like this for weeks, months or years, bound by the chains of ME/CFS, changes a person. The lauded plasticity of the brain seems only to work in reverse as your mental powers and thought patterns seem only to shrink and atrophy.

    When a bad ME/CFS crash gradually subsides, you can't remember who you were before it hit. Or maybe you are able to remember that good things used to happen, that you were at one time capable and productive. But it can seem as if these memories are not really your own; it can feel like you are thinking about someone else's life.

    Were you ever strong, active, happy? Can you ever be so again? How do you get there from where you are?

    The road seems unclear, the means out of reach.

    I spent months in bed, rousing only to drag out to the family for short periods, and only on "good" days. I progressed to sitting in a chair, staring out a window at a world that had forgotten me and was now irrelevant to me in my new life as a vegetable and cripple - too sick to read a book or watch TV - well enough to be suffocated by the endless sameness of empty days.

    Eventually, I was well enough to rail against the void. For several years, I would spend my evenings in my bedroom, after managing to eat dinner with the family, talking to myself.

    My conversations were repetitive and full of rancor and anger. I complained about the unfairness of my fate. I felt shame and guilt about the possibility that I somehow had done this to myself, at my inadequacy in being able to pull myself together and take care of my family.

    After a long time, all this venting brought me to a kind of crossroads. I had no idea how to get out of this mess. I had no energy to follow a plan if I'd had one. But somewhere, my direction changed. And I decided to ... expect things to get better.

    It sounded foolish even to myself. How could expecting improvement lead to anything but frustration and disappointment?

    I didn't have an answer to that question that brought any comfort or reassurance. I just knew I couldn't go on like this in the unrelenting dark.

    So, metaphorically speaking, I lit a candle. Would it be snuffed out? Would the dark seem even blacker as a consequence? I didn't know.

    As time went on, my little candle was extinguished more times than I care to remember. Really, I can't remember. I just know that it was one step forward, then plummeting back all the way down, over and over again.

    My hope, in retrospect, became a life line. I didn't get any quick rescues, didn't find myself suddenly being pulled up into the light into a better day. But I knew I had to change my mind, re-direct my thoughts into a new path. I had to believe that maybe my life would get better.

    As it happens, things did improve. I'd like to say that I found myself in a better place just because I believed it could happen. That this will happen to you too. I can't do that, in all honesty. And to say so would not be fair.

    As I said before, there are no guarantees. But the only certainty if I gave up on hope was that I would probably stay where I was. Not a guarantee I wanted to live with.

    How does hope improve things? I don't know that either. It's not like pushing a button. It's not like getting a new and readable map. But it did sometimes make my days lighter. Telling myself that things would not always be like this sometimes made the burden of being alive easier to bear.

    For me, two of the things that made a difference were finding a proper diet that worked for me, and stumbling upon a naturopath who was compassionate and who wanted to help me above and beyond the norm. It was learning how to rest, and to take small steps. It was being in contact online with people who cared about me. Some of those people I found on Phoenix Rising.

    I have to believe that as each of these pieces to my puzzle fell into place, they became possible in part because I hoped for them, because I was open to and looking for the possibility - even though I knew there were no guarantees.

    Even during the dark times in limbo, even when all that this hope was doing for me was suggesting that this grief was all temporary, having hope made it easier to survive in the dark. And that in and of itself was better than where I'd been for so long.

    Are you able to hope?

    Phoenix Rising is a registered 501 c.(3) non profit. We support ME/CFS and NEID patients through rigorous reporting, reliable information, effective advocacy and the provision of online services which empower patients and help them to cope with their isolation.

    There are many ways you can help Phoenix Rising to continue its work. If you feel able to offer your time and talent, we could really use some more authors, proof-readers, fundraisers, technicians etc. and we'd love to expand our Board of Directors. So, if you think you can help then please contact Mark through the Forum.

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  2. alex3619

    alex3619 Senior Member

    Logan, Queensland, Australia
    Hope is fine as long as its tempered with realism. I could not survive without hope, I would probably go into a depressive cycle with a bad ending. However I can't just hope that things will be OK and go out on the town, or drink a bottle of whisky.

    Hope is not optimism either. You can have hope and be pessimistic. Its something very different from having a negative or positive outlook.

    I can't just hope things will be OK in ME advocacy either. Things might turn out OK (such as with the current IOM controversy) but reason gives me a capacity to assess risk.

    Hope is an ingredient for an ME survivor. So is reason, compassion, patience, courage and persistence.
    justy, xchocoholic, Ruthie24 and 4 others like this.
  3. xchocoholic

    xchocoholic Senior Member

    My first appointment with a CFS researcher in 1992, dashed all my hopes for recovery. My medical records from the two years prior to this proved that my body couldn't function. I had acute onset me/cfs and had seen a long list of doctors including the Mayo Clinic.

    My job at that point was to survive so that I could single handedly raise my young daughter. Her father wasn't parent material.

    I hadn't thought about having hope until
    I started on my healing journey in 2005.
    And at that time my motivation came from the anger I felt from wasting 15 1/2 years
    solely trusting traditional medicine. I've mellowed out now and am using the paleo diet, supplements and certain meds to function.

    I can't say that I'm hopeful for a recovery but I've learned to make the most out of my limited lifestyle.

    Learning to look for something that puts a smile on my face has helped tremendously. I have a long list now.

    Tc ... x

    Ps. I've found counseling very helpful in times of stress. Vocalizing my feelings and having them validated helps. My friends and family are good at supporting me but the drained look on their faces just made me feel guilty for dumping on them.
    justy, rosie26 and Jody like this.
  4. Emma


    Here's what I do: I remain hopeful that things may get better, but I don't focus that hope on any specific time period (for example, "I'll be better by summer" or "by Christmas" etc). This way I can still keep hope, but avoid the disappointment.
  5. rosie26

    rosie26 Senior Member

    I have struggled a lot with disappointment which @Emma mentions. It can make me feel lost and hopeless.
    I have hoped all my life for things and a lot of those things have never come to fruition. I have questioned a lot my hope and the things I have hoped for. I think I have hoped naively or as @Alex puts it without adding realism to my hopes. I am inclined to believe, hope in the impossible - so no wonder I get disappointed at times. But even naïve hope can get you there, so better than no hope.

    I really think things are starting to turn for us in the world of ME, I am very excited about the research that is going on. The Lipkins and Rituximab. Yay, at last !!!!!!!
    And also PR, what an amazing place this is, where we can all be together. Thanks everyone for all your generous postings, love and concern for everyone and very importantly for all the laughs. So need laughs don't we.

    Jody, you put into words what I can't, I am saving it. xx
    justy, xchocoholic and Ruthie24 like this.
  6. Jody

    Jody Senior Member

    I understand what you are saying, Rosie. I have also had hopes go unrealized for years, and seen somethings that I know can never come to fruition because the possible time for them is long past. But I agree, some hope is better than none, and we take our chances on being disappointed.

    I think some things may be turning around for the ME community as well. Some things are beginning to happen that never have before. So we continue to have hope.:)

    Thank you for your kind words, Rosie. I'm glad my words have spoken out for you.
    rosie26 likes this.
  7. GracieJ

    GracieJ Senior Member

    Hope emerged for me when I finally woke up to the fact that I had been in a vicious loop of grieving for the better part of 20 years. There is another side, another facet to life that includes joy, happiness, and hope that can happen after all the grief is worked through consciously. It doesn't matter to me so much any more that my situation is still uncertain or precarious, or that the future seems a huge question mark. Every day is a blessing, whatever it brings. I have entered into a period of happiness and peacefulness that is obvious to anyone speaking with me. There is a light and a glow in my face that strangers ask about. Yes, it is possible to transcend the present circumstance and live hope. The key that unlocked it was conscious grief work over every last little loss, and then finally being able to let it go. Is it still tough? Yes. Do I still cope with symptoms? Yes. Is it easier? YES.
    Jody likes this.
  8. Olena


    Very much sympathize with, Jody.

    I got sick this spring, and I feel bad, but try to work because I'm the only one who earning money in my family-for my daughter who is studying in school, and for my older parents.

    It's so hard - to start thinking differently about recovery!
  9. Jody

    Jody Senior Member


    I'm sorry to hear you are so unwell. What you are doing is very hard. I also am the only one at my house who can work. My job is not hard, and I get to work from home but there is so much worry. We know that if we can't do it anymore, there is no money coming in. We do what we can for our families.

    To do that without hope, for me, became like trying to find my way in the dark. With hope, I look for the light, for the better things to come.
    rosie26 likes this.
  10. RosieBee


    After first 10 years of severe ME I made a good recovery - and this knowledge keeps me hopeful of success again. My GP had told me I would never recover as I had been so ill for so long; bit of a red rag to a bull! Since that recovery I have crashed again twice. This latest crash has lasted 7 years and the things that helped me recover before don't seem to be working which can be really tough to deal with.

    What keeps me going is the knowledge that I did recover before. That this body was once so very badly afflicted by ME but still managed to recover a good quality of life. If I could do it then from being so ill, then I can have it again now. A certain amount of letting go and acceptance is needed, especially as I am now also getting older. But the knowledge that I made a good recovery once before gives me hope of enjoying a good quality of life again.

    At long last, I have seen small signs this year that I am on the road to recovery - I see it as turning a supertanker round and traveling in a new direction. The pure joy of experiencing progress has been tempered by steps backward, that can hit me hard, and it is those moments when I have to remind myself of how well I was when I recovered before.

    If I can understand why my body is ill, then I can help it to recover. Maybe a big ask, but it is what keeps me hopeful.
    justy, Jody, rosie26 and 1 other person like this.
  11. RosieBee


    Thank you Jodie for putting into words what I cannot. This community helps keep that hope alive, exchanging information and encouragement.
    rosie26 likes this.
  12. Dreambirdie

    Dreambirdie work in progress

    N. California
    Thanks @Jody for sharing your personal process. I can relate to and empathize with much of what you've gone through. But unlike you, I'm not a fan of hope. I have found hope to be a trap, that tangled me up in expectations and then, when those expectations weren't fulfilled, it would take me down into the hell hole of deep dark agonizing despair.

    I invested a lot of energy in hope during the early decades of my illness, and hope always disappointed me. In fact, it's my observation that my need for hope was usually driven by desperation and fear. When I felt confident about my progress, I had no need for hope, But as soon as I found myself sliding down the slippery slope of another long crash, then the fear of not being able to crawl my way out of it, would trigger that desperate hope reflex. I feared, therefore I hoped hoped hoped. Not very helpful. In fact, rather crazy-making psychologically, as it projected all possibilities for a worthwhile life somewhere OUT THERE into the distant, yet ungraspable, future. In the mean time, here I was stuck in the not so pleasant present, and what made it all the more unpleasant was that it didn't live up to my hope of what I yearned (so helplessly hoping) that it should be. Yikes! And no thank you to any more of that!

    At this point, instead of helplessly hoping my way of unpleasant circumstances, I prefer to embrace the moment, no matter how godawful it is and to just do what I can with what I have in that moment. What kind of day is today? What is my energy up for? And what do I want to do with the limited energy I have?

    Creativity and nature are the most healing and inspiring things in my life, the former being more actively engaging, the latter more receptive and ingoing. The more of each of these I can immerse myself in, the better off I am. And the key for me has been to not set up any expectations of any kind for how I "should" feel or how I "should" proceed through the moment that I'm currently in. Embracing whatever I feel, no matter how torturous and dreadful, is part of the equation, as anything I resist will inevitably come back to bite me in the ass. So if I'm pissed at my illness, I paint it out. If I feel sad about it, I write a song that expresses the agony I feel. If I am having a moment of genuine joy, I get up dance for a minute, or dance with my arms, while laying in bed. If I have no energy to put out and just need comfort and quiet, I go sit by the ocean and suck in the peace and beauty. I find this all so much more preferable to hoping.
    justy, helen1, RosieBee and 1 other person like this.
  13. Jody

    Jody Senior Member

    Happy to have done it, RosieBee. This is a great community.
    RosieBee likes this.
  14. Jody

    Jody Senior Member


    I'm always happy to hear another perspective that is working for someone. Glad to hear that it is working for you.:)
    RosieBee, Dreambirdie and rosie26 like this.

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