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…