ME/CFS: A Personal Epiphany

For a while I’ve been struggling with the nagging feeling that, despite all that I think I know about how to deal with this illness, I’m missing something important. I’ve been back in England a year now and comparing my health with how it was when I first got back, I see that my condition, if anything, has got slightly worse. My concerns that I seem to be moving in the wrong direction have been strengthened by concerns expressed by my nearest and dearest, who, at present, are gently prodding me to seek further medical help, offering to contribute financially to some private tests. Although I’ve been looking into this, I’ve been experiencing a sense of resistance. Will the tests really tell me any more about how I can better manage my condition?
This sense that I’m not quite on the right track, combined with family concerns, combined with the fact that I spend half of my energy writing my book or my blog has led to me carrying around a sense of focused mission: A steely determination that I will find the way to get better that borders on obsession. I’ve suddenly realised that this intense focus is accompanied by a not unsubstantial amount of unwanted tension. This is ironic really, when my whole approach to overcoming this illness is based on finding a way of being free from tension.
This week I’ve found myself reflecting on what was different about my way of being when I got better the first time. I remember that Taoist philosophy played an important role in helping me become a person free of tension, who took everything in my stride with easy and relaxed effortlessness. I resolved to revisit some of the books I read back then, throwing myself a further challenge to add to my mission, piling on yet more ‘work’.
However because that resolution only added to my tension I wasn’t satisfied that that was the way forward. I reflected a little more about what made it possible for me to be the way I was. Back then I wanted my health to improve too, back then I also tried to learn whatever I could that would help me get better, what was different about then that kept the tension of obsession away?
Like all epiphanies, the answer didn’t come to me during those reflections. It crept up on me out of the blue as though certain pieces of a puzzle, both from my previous illness experience and from more recent experience, had been floating around and suddenly finding each other, merged to create a clear picture.  Trust.
What I had back then, that I’ve been lacking more recently is a sense of trust. Trust that in each moment the universe is as it should be. I am responsible for making the changes that need to be made to make my life better but this doesn’t involve battling against the way things are. It involves being open to all possibilities and trusting my inner wisdom. It involves having faith that by allowing myself to ‘be’, the answers that I need will present themselves. By letting go of all tension and anxiety I will find myself open and free to find what I need.  This needs to be more than an intellectual concept, it needs to become faith. I need to trust that health is a natural state and that it will be achieved by a relaxed natural way of being. I need to trust that the universe will provide. My epiphany was a sense of the truth behind this trust. Unfortunately it doesn’t yet stay with me all the time but each time I notice myself in a state of tension I can make the choice to trust.
Another irony is that part of the reason that I lost touch with this trust is to do with my writing. In wanting to help people, I felt I needed to write in a way that would be accessible. I didn’t want to turn people off, with what they might see as ‘spiritual quackery’. In trying to keep my writing as ‘safe’ as possible I distanced myself from an important part of my being. So today I fully come out of the closet. Self-help isn’t just about intellectually knowing what to do for the best. It’s about trusting that, by living without resistance, you will learn what you need to learn. It’s about having faith that you will get better.



2 thoughts on “ME/CFS: A Personal Epiphany”

  1. Thank you for sharing your feelings, it’s such an honest post which I admire you for writing.

    Yet again I find myself going to bed only to end up coming across videos and articles of interest that feed my obsession. Like you I am a bit obsessed, although I try hard not to be. The local support group I have joined is full of people who haven’t recovered…and if I’m honest it scares me. Yes I have accepted the illness as far as I can for now and yes I have changed completely in lifestyle and to some extent personality but somehow I don’t think I’ll ever stop hoping for the day when I’m free form this horrible illness. It scares me to think that I won’t ever get my health back. It also scares me to think about giving up hope as well as to live in hope for the rest of my life. I’m not saying I’m relying on my recovery because I’m sure I’ll make the best of what I’ve got (some traits never change!) but the thought of never completely recovering is a sobering and depressing thought for me. Does anyone really give up hope? and if they do are they truly happy?

    I wish you all the best with your recovery,blog and book. I am taking it upon myself to read more recovery stories to rekindle some of the hope I feel I’ve lost.

    Be kind to yourself. x J


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