Me, me, me…

Raven, with her hood down, meditating.

Raven, with her hood down, meditating. (Photo credit: Wikipedia)

You know those warnings you get before certain TV programmes?: ‘This show contains scenes that some viewers may find disturbing?’ Well, I feel I should start this post with a warning. Not that what you’re about to read is of a violent nature, or sexually graphic, but more that I am in danger of drifting into areas which may initiate the eye roll manoeuvre. So, be warned: ‘You are now entering a zone where words such as journey, spiritual, and awakening may be used, words which some readers may find nauseating.’ I understand if you need to step away – immediately.

You see, there is an unexpected, and rather pleasant, twist to my current situation. If I was to use words without feeling self-conscious, I would say I am on a spiritual path (I did warn you), but to say that makes my own eyes roll, let alone yours. When people use the word spiritual, it always seems to be surrounded by a cloud of arrogance, like they are better than the rest of us, who give into the temptations of a shallow flavoured life; that they are so deep, and we are, well, missing the point of it all. But as much as my shallow temptress is vying for my attention, I can’t help but find myself drawn to all things spiritual.

I feel so unwell most of the time, and the only thing that brings me any sense of peace, or makes me feel any better – or at least not worse! – is meditation (or something in this family, such as hypnosis, or visualisation). I am not new to meditation, but something feels different this time; I think because I am working harder at it. If you’re not used to meditating, this may sound like an oxymoron: meditating is about relaxing, after all, why should you have to work at it? But it’s a skill to meditate properly; a skill to be strict with your thoughts, when they invade your mind with their incessant neediness, demanding attention, like a desperate Big Brother contestant. And it’s a skill I’ve been working on. I’ve not reached the skill levels of a Buddhist monk (although I’m probably putting in the same hours), or am I even approaching that level of ‘zen-ness’, but I am aware that I am experiencing a deeper level of meditation. And this is having a big impact on how I’m feeling about this relapse; I feel more at peace, and patient, with being unwell than I have ever done before. It’s not that I don’t want to get well, or that I’m not trying to get well, I’m trying bloody hard, actually (I have a very focused treatment plan in place*), but I am determined to be at peace with every day as it is, not live for the future, or believe happiness only exists with wellness. Time isn’t stopping for me whilst I get the CFS under control, my life is still my life – in a different guise, certainly – but I want to live as fully as I can every day, making the most of everything I experience.

I think part of the reason my meditation practice is becoming more powerful, is because I’m working hard on being present. It’s something I’ve tried before, but I guess I didn’t try that hard, because when I started focussing on this more intently, it made me realise how often I was living in the future, or the past: mulling over something that had happened (for mulling, obviously I mean crazily obsessing about things unworthy of said attention), or worrying about something in the future (yes, yes, okay, still obsessing). If you are prone to stress, which I most definitely am, you probably aren’t spending too much time being present, because generally, as I am learning, there isn’t usually much to stress about right now – if you take this moment as it is, without letting thoughts about past or future sneak in. Again, I have not mastered the art of being present, but I am an enthusiastic student: the annoying girl at the front of the class, rushing to answer the teacher’s questions. But being teacher’s pet is paying off, and I am managing to be present more often, and I must say, it is rather liberating.

I also knew – once I realised how serious this relapse was, and how long it may take me to come out of it – that I needed to keep my mind in the right place. When I’m not in the peaceful space of meditation, being present does stop me from ending up in the land of unhelpful thoughts (and I do feel like there is a black hole of despair tempting me, that I could easily drift towards, even fall into, but I am determined to stay well away). But I need more than that, it’s not enough just to stop the crazy ‘what ifs’, I also want to feel inspired about recovery. I want to keep the positive thoughts flowing through my subconscious, maintain a sense of possibility; nurture feelings of hope, belief and faith, about getting well. I can’t read much at the moment – it’s simply too exhausting – so I loaded up on TED talks, podcasts, audio books, and YouTube talks – seriously, my iPhone could hold its own three-day health and happiness conference. I’ve listened to experts talk about mind-body medicine; I’ve listened to amazing healing and recovery stories, many from supposedly incurable illnesses; I’ve listened to stories of people overcoming extreme life challenges; I’ve listened to talks on the power of belief; I’ve learnt more about meditation and Buddhism; I’ve learnt about nutrition as medicine; I’ve listened to spiritual leaders talk about health, happiness and finding meaning in life. And the more I hear about what is possible, and what other people have overcome, the more I know I can find peace with what has happened, and find my own way through.

And there’s another, very unexpected outcome, with all of this learning, meditating, and spending quality time with myself: I’ve found myself actually starting to believe I am good enough just being me – not just rationally, like I used to believe it, not with a yeah-yeah-right, on the side, but in my heart. I am starting to understand that I am still good enough without any fancy trappings, without a career, without working on taking my writing forward, without succeeding at getting well, without achieving whatever it is that I have picked as my current target, without anything external to identify with or measure myself by. Not that there is anything wrong with wanting to do amazing things with your life, or going after what you want, but that whatever you do, you are still you, and still good enough, whether or not any of it comes off. After nine years of health challenges, after nine years of not working, after nine years of not being able to always do what I want to do, the essence of me – that unquantifiable thing we all have deep inside, whatever is taken away from us; the part we sometimes forget is there, because we’re so invested in what we do, not who we are – is still very much alive. I mean ridiculously alive, almost as if the more I am stripped bare, the less I can do, the stronger and more vibrant the inner me is – I’m not quite sure how I’ve managed to ignore her for so long as she appears to be rather feisty.

And, for me, the ‘am I good enough?’ internal fight, has always been wrapped up in appearance too (because clearly it’s not unreasonable to want to be uber successful AND totally gorgeous): a deep insecurity that I have had for most of my life, that I am never slim enough, or toned enough, or attractive enough, or stylish enough, and more recently, the new entry of wrinkle worry. I’ve caught myself over the last few months, on the odd occasion I’ve rocked a touch of glamour, and maybe even some make-up, saying to Mike, ‘oh, it’s so good to feel like me.’ And I laugh, because what a funny thing to say. Who do I think I am the rest of the time? I’m still me, obviously, when I’ve got my PJs on, no make-up, and sofa head – which at the moment, is most of the time. And maybe it is because I’m spending so much time with this version of me, that I’ve got more used to her, more comfortable with her. Not that I think she looks amazing – she most definitely does not! – but I am more accepting of her. Me, just me, is enough. And, of course, Mike hasn’t deserted me since I became the PJ Goddess, because, as we all know, love goes much deeper than toned limbs, a funky outfit, and a pair of heels – but even though we know this, it always seems so much harder to apply this to ourselves. (And, obviously, it also proves, that my PJ collection is indeed, totally loveable.)

I can’t help but feel privileged to be having this time, time to do this level of sofa gazing: a justified reason to be totally self-absorbed, what more can one ask for? Time to think about life, love and the universe, without anything getting in the way. It’s kind of like a retreat, well, without the extreme yoga poses, or the colonic irrigation, or the disgusting vegetable juice detox. And, instead of a week, it’s been seven months, oh and I don’t have to be silent, I can still use Twitter, and chocolate is allowed – a sort of cosier, kinder, less intense retreat experience. And it’s fun. Maybe not the same kind of fun as buying this season’s must have shoes, or getting a bit tipsy and having uncontrollable giggles, or dipping your toes into the waves on a beautiful white sandy beach, but fun in the way you feel when you are enjoying learning something new. And learning has always been high up there on my needs – wants – hierarchy. It’s not the kind of learning I ever thought I would do mind, but I am sure the experience will help me way beyond my current CFS battle, and will be way more useful to me than my MBA has proven to be, for my dedicated career as a sofa chick.

So this time, which could so easily be a dark time, simply isn’t: everything I am learning – about life, about myself – stops me from feeling like time is being wasted, and I feel like I am still living a meaningful life (maybe more meaningful than many ‘well’ people, trapped in jobs that aren’t fulfilling, living for the weekend). It’s a difficult time, for sure: the daily challenge of not being able to do very much, of feeling so unwell a lot of the time, of having to be incredibly strict with my rest schedule, just so I can manage to do small things, and keep on top of daily life. And yes, I feel sad about what I’m missing out on, and sad about not seeing friends and family (think I may have mentioned this last time). But I’m not feeling desperate, or hopeless, or depressed, which it would be so easy to feel, given the difficult circumstances.

Then at 8 pm, everything returns to normal. All spiritual activities are packed away for the day, and shallow pursuits reign. Bet the Dalai Lama doesn’t get to put his feet up and watch Scandal, or The Big C, or Mistresses, eh? Yeah, spiritual leaders of the world, who’s got the answers now?

* For those of you interested, this is my treatment plan:

Dr Myhill, an M.E./CFS specialist, reviewed my case, including all my test results from over the years. I also had mitochondrial function testing, and as expected, the results were very poor. She also identified that I have an upper fermenting gut, which makes digestion and absorbing nutrients difficult. Based on all of this, she has prescribed a detailed supplement programme, which I am following. It’s a slow project though, as my system is very sensitive, so I have to introduce supplements slowly and in tiny amounts.

On the psychology side, I am working with another M.E./CFS specialist, The Optimum Health Clinic. The focus here is on mind-body medicine, working on calming the nervous system down, and keeping the body in a healing state. I am also learning how to manage moving forward in a more measured way, to avoid the boom and bust cycle, I have mastered so beautifully.

I’m optimistic about my treatment strategy – I am working with some of the most knowledgable people in this field, and feel like I am in some of the best CFS recovery hands out there. But, I also know, it is not going to be a quick fix. Let’s hope I can maintain my new cosy relationships with acceptance, peace and patience…

13 thoughts on “Me, me, me…

  1. It makes me so happy whenever I see a post from you! At the moment I’m not in a very accepting frame of mind when it comes to my illness. But I have to say that in spite of everything, I’m much happier now than I was before I became ill. Really. My boyfriend (I met him not long before I became ill) also agrees that I seem a lot healthier emotionally now. I think it’s due to all the emotional work I’ve done (and I include watching Oprah in this), and also just learning to appreciate the little things. I totally get the need to use clichés. 😉 I think when my health failed, it was like a gratitude and emotional helth bootcamp, because continuing with my often destructive thought patterns and view of life in addition to being ill would just have been be too awful. But it’s an ongoing process for sure.

    If and only if you’re up for it, I would really appreciate some tips on inspirational youtube videos. But no pressure (seriously), I’m sure I can find something by myself aswell. I like to entertain myself with rude jokes these days…

    I’m also wondering if you have any thoughts as to why you’ve had a relapse? If I’m being too pushy or curious, please ignore me. 🙂

    • Hello lovely Maria… It makes me so happy when I get a comment from you!

      More than happy to share some of the things I’ve been listening to (we may even be able to sneak some Oprah in for you), and why I’m in my current relapse. As soon as I have a little energy window I’ll pop back.

      Sorry to hear acceptance is giving you the runaround. I find my relationship with acceptance is ongoing and needs lots of nurturing. Sounds like you have a good man there – you’re totally worth it though, of course!

      See you soon… Xx

      • Hey lovely Maria

        As promised, here are some of the things I’ve been listening to:

        ~ TED talks have soooo much stuff. I just search by whatever takes my fancy.
        ~ Have you got an iPad or iPhone? If so, there are loads of free podcasts on there. One of my favourites is Hope, Healing and Wellbeing by Mary Tracey O’Keefe (there’s hours and hours of calls in here). I’ve also been listening to ones on Buddhism.
        ~ Jonathan Fields has got a collection of interviews on YouTube, with inspirational people from all walks of life.
        ~ I’ve listened to some stuff from Brandon Bays (the book she is known for is The Journey) on YouTube. Her focus is on releasing past emotions to enable healing.
        ~ Viktor Frankl on finding meaning in suffering is really interesting – on YouTube too (I’d like to read his book).
        ~ I’ve watched some great films on nutrition: Fat, Sick and Nearly Dead (on YouTube). Fork over Knives, and Food Matters (on Netflix).
        ~ I’ve listened to loads of stories of people overcoming serious illnesses – often illnesses they were told were incurable. (I like these ones!)
        ~ Deepak Chopra has his own website, with loads of videos which are free to listen to. And there’s loads of his stuff on YouTube too.
        ~ Eckhart Tolle (The Power of Now) on YouTube. You can even see him interviewed by Oprah!
        ~ Lissa Rankin. I loved her book Mind over Medicine, but she’s also on YouTube and TED.
        ~ I also enjoyed listening to talks on the placebo effect, such a powerful way of really getting the mind body link.

        And the other place that has been a huge source of inspiration to me is Secrets to Recovery: This is the online resource from the Optimum Health Clinic. I’m not sure what your budget is like, but I would definitely recommend it, if you can afford it. The cost is £97 for over a hundred hours of material. This is very specifically tailored to CFS recovery. (This is where I have really grasped acceptance.)

        In terms of my relapse, I know exactly what happened! About 16 months ago I pushed myself to do something I wasn’t well enough to do and I crashed. I picked myself up, did too much again, then crashed again. I repeated this cycle about four times in 12 months. (Shame on me!) I think I was just so desperate to hold onto some level of wellness and in complete denial about what was really going on. Then in January of this year my body had just had enough of me, and screamed stop, very loudly. (Fair enough really.) I have been in this relapse since then. It’s possibly the most unwell I’ve been over the last nine years and I really have no one to blame but myself! But I’m doing it right this time. My pushing days are over for good; I have definitely learnt my lesson.

        I hope some of the above tickles your fancy, my lovely, I know we all find different things inspiring, but hopefully there’s something in there you like.

        And I hope today is a wonderful day for you…


        • Thank you so much! It was really helpful to hear about your relapse aswell, even though I’m sorry you’re ill. It helped me make sense of mine. I’d been doing better for a few months, I wasn’t well enough to think seriously about getting back to a “normal” life, but I had definitely been seing improvements. I’d been travelling over the summer, seing friends quite often and enjoying just strolling around without noticing much of any bad effects. Then my boyfriend and I had some issues (we’re doing much better now thankfully), and it was so painful and stressful for a few months. During that period I wasn’t able to eat enough, and I was a bit underfed to begin with. Still I was doing quite well (though I’m guessing I was weakened by the stress), but I think I just finally overdid it with walking, coffee dates and playing badminton with my boyfriend ouside our building, as we patched things up (though we only played twice). In addition to all that I had been adding some new herbal medication to what I was already taking (one doctor thinks one of the main issues is lyme disease). Then I got a cold and I have been mostly back on my trusty sofa since then. It kind of reminds me of when I first got ill. It seems like I need to relearn some things aswell. Like not overdoing it and being gentle with myself when I’m feeling bad. So on the bright side, I like watching fun things on TV! And I like it when I’m kind to myself.

          Isn’t there a saying about how really smart people learn from their own mistakes, but geniouses learn from others?! I need to keep that in mind. Thanks again!

  2. It was so wonderful to catch up with you Karen. It sounds like you’re doing all the right things. You might consider getting my new book, How to Wake Up, because I talk a lot about the stressful stories we invent about our lives and our futures any how believing them can really derail us. And then I propose a method for learning to handle it skillfully. It’s just a thought. I mainly wanted to say that I hear that strong spirit of yours coming through and that’s so important! Love to you, Toni

    • Hi Toni

      Yes, it was lovely catching up. I think about you often, and often talk to Mike about you: I call you ‘Professor Lady’!

      Oh, you’re book is in audio. This has made my day. It is downloading onto my iPhone as I write!

      We go away in a couple of weeks, but when I come back, I think I could manage organising a guest post with you about your book – if you still want to, of course. I’ll send you a message in a few weeks, and we can go from there.

      I hope today is a lovely, calm, relaxing day for you. And thank you for coming by, it’s wonderful to have you here… Xx

      • Oh dear, Toni. I’ve been listening to your book the last couple of days (loving it) and I can see that calling you ‘Professor Lady’ might have offended you. I’m so sorry if it did.

        I know you are a wonderful lady, with much more to you than what you used to do, I was just being tongue and cheek. I hope I didn’t upset you.

        Here’s to no fixed self!


  3. When i was well and busy, i used to think,
    ‘oh emotional spiritual intelligence, i’ll do that one day, they say meditation is very good for you, but who has time? Pour me another wine…’

    Well yep, now i have time (and i suspect my lifetime wine quota has been drunk already) and as you say it takes, a LOT of work, but i suspect that my life may very well depend on it (mastering staying calm and positive in the face of an me/cfs body meltdown), and i refuse to give in to the dark side. I think of it as being smart stubborn instead of my usual stupid stubborn.

    So now i need to turn my phone off and get back into it. Thanks for the great post.

    Good luck with the meditating, etc…

    Xo ketra

    • Hey Ketra

      Ah yes, the too busy being busy – I had that disease too!

      Ooh, I like the idea that we are smart stubborn. Sorry to hear you are having to draw on these skills so much though.

      Here’s to not giving into the dark side. And good luck to you, my lovely. Calm and positive waves coming your way… Xx

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