You know, it really wasn’t my intention to start this week off with another post about health and recovery… but it was something both interesting and hugely positive about recovery from chronic illness, in my newsfeed, that nudged me this way. More than ever, I am convinced of the merit to be found in this kind of ‘optimism sharing’, especially based upon some wonderful emails I’ve received lately, in response to my blog, from people who have managed to gain a foothold in their own recovery from something that I happened to say; and I do think the more we all pool our positive anecdotes, the quicker we will get out of the groove of the cultural belief that ‘chronic’ means forever.
So today’s detour is as a result of delving into a website called “CFS Unravelled“, which I chanced upon this morning and which turns out to be a mine of resources for anyone embracing recovery. I’m guessing that it was my last post that caught the attention of my latest Twitter follower Dan Neuffer who, I discover, writes and shares interviews about (his own and other people’s) recovery from chronic fatigue syndrome (CFS) and Fibromyalgia (FMS) in this incredible web resource that he has put together and which is literally bursting with positive anecdotes of recovery. In my early morning, still-in-bed, state of browsing all that he shares, I took a random dive into one of his interviews and came upon Kate Moody, who offers her own recovery story (more via the following link) and who now runs a business called Radiant Wellbeing. I’ve since delved into a couple more of the interviews and intend to go much deeper into this site since it offers something very few web resources ‘out there’ offer to people with CFS and FMS and that is spade-loads of optimism and huge amounts of subtantial information backed up by a growing collection of recovery anecdotes. Anyone that has spent any time on this path will know that this is a rarity indeed; Dan mentions, early on in his interview with Kate, how most of us have been told, probably countless times – by a variety of health professionals – that we will never recover from our illness (a belief I have consistently refused to subscribe to) so to stumble upon so much information to the contrary was quite a Monday-morning gift!
Just the quickest dip into Kate’s story flagged up so many cross-over stages with my own recovery journey that it highlighted to me how important certain key phases are, almost like rites of passage through the territory. The familiarity of her story, compared to mine, was so profound that I immediately felt that I wanted to bullet-point these experiences again (through I’ve written about them, at length, before), in case this helps others to recognise them as important stages in their own journey towards the recovery that might still be feeling so elusive to them. The more I connect with other recoverees, the more I am finding that there are these very typical ‘events’ in common and which, looked at under a different light, reveal themselves as the very progress that is being made – though it can feel like anything but progress at the time. It makes me want to newly flag them up as the footholds they really are, offering the very leverage upwards that will get you up to a higher place than you were at before, rather than the rut that they so often feel like when things (and symptoms) are feeling stuck and rather hopeless. It struck me today, more than ever before, how thin the line is between an experience presenting itself one way or the other (as ‘rut’ holding you back or as ‘foothold’ helping you climb out of there) and that a tendency to regard a situation as the latter is something that recoverees from chronic illness seem to have in common; they find opportunity where others may see none. The vast difference between these two reactions boils down to a simple matter perception, a choice to see things one way or another, yet one which can make all the difference to your recovery prognosis. It makes me want to reassert something that I know I’ve said before – but which is worth saying again (as many times as it takes) – which is, wherever you happen to be on this journey, please know that these very typical experiences of chronic illness are not sticking points but, rather, invitations to learn something of huge personal significance (and opportunities to reinvent your life) and that you are just passing through the territory, not moving in permanently. Once you start to get this, the great gift at its core is that “chronic” no longer means “life sentence”.
So, in at the beginning, and the first stage of the journey through chronic illness, one where so many of us stop for what can feel like the bleakest length of time; a stage often referred to as the big ‘burn-out’. FMS and CFS so often start with a sudden crash or fairly abrupt nose-dive in health issues following a long period of over-doing it, burning the candle at both ends, high pressure living, emotional strain, working around the clock and pushing yourself very hard physically without taking time to listen to clues that ‘minor’ physical issues need to be addressed. Mine certainly did; I had been living like that for years and with a particularly concerted period of stress, emotional strain and over doing it for the three year period before it happened. There comes a time when you can look back at this stage and see how ‘illness’ was your friend, telling you something you very urgently and obviously needed to hear about how you were living your life and the fact that something had to give.
When it happens, your no-nonsense-and-keep-going mentality inclines you to treat it like a flu and so you attempt to dose it up and then push yourself very hard to get through the symptoms, setting goals for recovery that are unrealistic and unrelenting then blaming yourself when your body fails to deliver. A low-level self-loathing, like the nagging censure from a harsh parent displeased with a child’s performance at school, begins to set in as the internal dialogue….which is entirely counter-productive to the recovery process that you long for. Only once self-love has been (re)established can the recovery process even begin to gain traction and so the realisation that all healing begins with this brings about the single most transformative realisation of your life; once you get there, which can take a little while but so worth it when you arrive. Self-love has revealed itself to me as the very key to the door of life or the one thing around which all else pivots (no exaggeration); something that I would share with every person on the planet if I could.
A big part of this transition into self-loving, away from of self-loathing (which is what so much anger directed at your failing health amounts to), is the need for acceptance of all that is happening to you; every bit of it, no exceptions, which can be a hard lesson to learn at the beginning. This does not mean acceptance in the same way as leaving the door open and inviting illness in every day, encouraging it to leave you increasingly bedridden, but it does mean being alright with whatever each day presents to you, allowing each moment to unfold without resistance and offering your body whatever it needs to be able to cope; which includes being adaptable to ever-changing circumstances without anger or undue frustration. For me, this surrender took me into a deep inner stillness that set me off on my spiritual journey and reconnected me with a vastly broader concept of who I am and why things were ‘happening to me’ but, even without the need to go into this spiritual perspective, any degree of acceptance that you can bring to the situation will generally make all the difference. The sooner (and more resoundingly) such acceptance is achieved, the sooner (and more resoundingly) the whole deep-cellular system of your physical body begins to relax into a state of trusting that you have its best interests at heart and will neither push it into what it is incapable of doing right now or hold it responsible for every ‘disappointment’ or ‘failure’ – in fact, such vocabulary (which is a throw-back to your old life) has to be dispensed with completely to even get through this phase; which is no bad thing…and marks the beginning of something very important indeed.
That ‘very important thing’ is the dismantling of the old you that measured yourself against a set of criteria that was programmed into you by parents, teachers, work-environments and a culture based on competing and measuring-up against societal norms. So, no small thing to achieve when you look back and assess the difference in yourself; and something which becomes one of the greatest gifts of your illness once you realise you are freed from ropes that still continue to tie-up most of the people you know. For my own part, I spent my whole childhood and young adulthood measuring myself according to how much attention my achievements gained from others and needing that attention in order to assess my own worth. When your biggest achievement of the day becomes whether you changed out of your PJs or emptied the dishwasher, you very quickly dispense with such benchmarks in order to survive. This can tip you into a long period of grieving for who you used to be (likely, a mega-organised multitasking over-achiever), into a period of complete loss of identity and, yes, into depression…until you realise you have unearthed something of considerably more value, at the core of yourself, than any of your old benchmarks could ever have flagged-up and which you might have otherwise overlooked for a whole lifetime, had this breaking-down of old criteria not occurred; so, another gift.
There’s often no getting around it (and I would be surprised if you did) – when you fall into a chronic illness like FMS, it is typical to pass through territory that looks a lot like depression; and doctors, bewildered by the state of your emotions combined with a myriad of ‘mystery’ symptoms, are often remarkably quick to write out a prescription for antidepressants. Yet what you really have going on is, most likely, not so much depression as it is a wave of abject fear combined with grief as you watch your old life, your identity and independence crumble away. I’m happy to say that most of those I have spoken to have passed this early test in the journey with flying colours and said “no” to such a prescription, preferring to keep their wits about them as they navigate their own survival. For me, this was a no-brainer and my gross indignation at the suggestion that my symptoms were the imaginings of a depressed person kept me away from the doctor’s surgery for years, as well as fuelling my own (invaluable) research into what was really going on; which, as it happened, was the best thing that could have happened to me. Again, a theme I keep coming across is the importance of taking ownership of this state of being, as your body descends into apparent chaos, and then your own recovery process – confusing and frightening as it can be – as the state of your own health holds all of its own answers within the ‘problem’ (which is really a ‘question’ – being “what is this telling me about myself, my environment, my life?”). While others can be of help and make valuable suggestions, the clues are all there for you to discover in your own body, encouraging you to look at your life to discover triggers and (if you have reached a plateau in your recovery), to question why you have become stuck again; in fact such plateaus can be an invaluable gateway to a whole new level of healing as you ask your way past the minutiae of individual symptoms (which can be such a distraction) into why you are still stuck in the territory at large. Taking antidepressants can be like scrubbing over clues in the sand with your foot, leaving you with no direction at all in a desert full of health issues; you really need your wits about you to recover, especially when brain fog and crashing exhaustion bring their own challenges.
Important to acknowledge (I’ve discussed this before and Kate Moody does this eloquently) that amongst reasons for feeling depressed at the loss of ‘old-you’ can be the profound hurt you are feeling at the reactions of others to what is going on in your life. To recap, the thing with FMS and CFS is that there is nothing much to see and people who have never been there just don’t get that there is anything wrong with you. Out of Kate’s long list, the most typical reactions that I have encountered are along the lines of “I would love to have time to get ill, I just don’t have that luxury”, “why can’t you go back to doing some proper work; after all, you can use a computer?” and “it must be so nice being a lady of leisure, lucky you” (I hasten to add, none of these comments came from my immediate family, who have been utterly supportive). You learn, with time, not to be affected and to (genuinely) not care what others think; you also select who you come into contact with and who to be open with about personal circumstances that are, actually, nobody’s business but yours. In my case, the need to explain myself to others steadily waned over time and I have developed a no-need-to-justify-myself attitude to life that is now serving me well in other quarters. Important to note: if you are a one-time ‘Type A’ achiever, it is also highly probable that some of this perceived criticism is self-generated and then projected onto others, who you assume are thinking these thoughts about you – definitely one to look out for and let go of!
Such an important stage; the one that acts like the wind beneath the wings of your recovery, is when you start to see what you have going on (warts and all) as genuinely preferable to what came before. There comes a time when you start to feel better for longer and longer periods and, yes, you will very likely look at the territory of your reinvented life and find much to be grateful for in the fact you no longer go out to a crazy-stressful office (or whatever you once did) or have that old manic lifestyle that had you running ragged seven days a week. You will notice the fact you have restructured your life~work balance from the ground up in a way that people stuck in corporate-land barely recognise as work (or life!) and that you have time and the degree of awareness going on to truly smell the roses of life. You will start to view the fact you have survived months or even years where taking a shower can be exhausting and everyday things like standing up for a few minutes or raising an arm above your head present more challenge and pain than most people can even begin to imagine as a reason to feel great about yourself, measured (if, indeed, it even needs to be measured…) by a whole new set of criteria. What’s more, you’ve gone through so much of all this on your own, coping with an almost taboo area of health that is still offered next to no support or recognition in the community, internalising as much of the pain and fear as possible so as not to become a burden to your family; all of which means you’re a real toughie and a survivor so applaud yourself! To quote Dan in his interview of Kate, most people struggle with a bad case of flu if it lasts for a full week and, if it continues into a fortnight, would feel like they have been unwell for an eternity…so just imagine a severe flu that last months or even years and you are getting somewhere close to the experience of FMS or CFS (Kate Moody quotes a doctor who likens them both to the advanced stages of cancer or aids).
Yes, you have probably lost some friends along the way but if your new fan-club has a considerably smaller membership than your old one, back in the days when you felt like you impressed far more people with your ‘achievements’ because they were measurable by job title and salary, then what does that matter given you no longer play life by their rules anyway and, in fact, you wouldn’t swop your world for theirs for any amount of money? You have had to overcome major logistical, and probably financial, challenges along this route yet your payoff, in the currency of real quality of life and the ever enriching experiences of a life that is nolonger rushed through or skimmed over, is one that just keeps on delivering more for you to appreciate. You reach a point when you can smile at the fact your life has virtually no rules anymore and because you no longer dance to that relentless old tune that half the rest of the world still hop around to – and there’s such liberation in that (appreciating, also, that without all the health-issues, you may never have achieved anything like this degree of liberty in this lifetime or before you were very old). So many people go on to reinvent their lives for the better, pursuing an entirely different passion as a vocation whilst understanding what it is to be truly, deeply healthy – in a mind-~body~soul kind-of way – as a result of a chronic illness so, dare I say it, here’s another great gift disguised as a stage where you start out feeling like you have nothing in common with anyone anymore and have stopped fitting in. Once fitting in no longer holds any of the appeal it used to have, you know you are well on the way to being recovered.
These are just a few bullet points describing what seems to be a fairly typical journey through chronic illness – a journey that not only takes you through recovery of your health but also (if you will let it) through the recovery of your life, bringing you to a place where it is even better than you could even imagine before. The new fact I am now able to surmise that any of my journey is ‘typical’ (not a term that is applied to the mixed-bag of FMS or CFS all that often) is thanks to some of the stories shared on Dan’s invaluable website; which has only made me more determined to share my experience so others can benefit from discovering ways in which their own recovery is, in any way, typical too. Sometimes we long for a little company on our journey and the long hike of FMS can be such a solitary and isolating thing that these forums for (positive) comparison can only be a great and an encouraging thing.
So, am I there yet? Well, very nearly (entirely in my inner state, with the body lagging some little way behind), plus I am no longer hard on myself about the fact the journey continues. If I was to add one more thing to the list it would be a reminder not to get discouraged by any of the set-backs; also, not to attempt to do too much too soon the very moment you are feeling just a little bit better (a classic pitfall), only to lose morale when your health takes another nosedive afterwards. This recovery process needs to be slow and steady, with realistic expectations put in place and no ‘non-negotiable’ deadlines for getting better by a certain date; for once in your life, you need to learn to live without a schedule and recovery from FMS will certainly teach you how. Yet something else I feel I want to add; once you let go of that schedule telling yourself you must ‘recover by’ a certain date, or a feeling that you are less than perfect in some way and in need of mending, its as though the few symptoms that are left become less important, far less defining, altogether less bothersome…which begs the question ‘what is recovered?’ anyway, especially when (in more ways than you can possibly count) your life is already infinitely more wonderful than you have ever experienced before. So, ask me that question again and I am inclined to answer ‘yes’!
As well as my original post “Coming clean“, describing my own recovery journey and all the many light-bulb moments that I had along the way, Kate Moony’s story is well worth the read if you are on this journey yourself. Her account of the trip she took through an array of bewildering symptoms and her emotional responses to what was happening, including the grief as her old life fell apart, the need to process old emotions locked up in the body, dealing with family and friends and reinventing priorities, will be very familiar territory indeed for some of you…and then to see how she learned from it all and transformed her situation into one where she is enjoying ‘radiant wellbeing’ will be an inspiration to many. As my first dip into Dan’s website, it was a good start and I have also watched his five steps to recovery videos (downloadable free of charge) which echo, in far more coherent scientific terms than I could manage, much of what I have concluded for myself about the likely causes of FMS and CFS, the themes they have in common and the most effective protocol for recovery. In fact, everything he shares feels consistent with my own findings and the many anecdotes from other recoverees are an incredible boost. I can do no better than to recommend that you explore the site for yourself and, in the meantime, hope that I have added a little more encouragement to the recovery mix.
- CFS Unravelled – Opening the Door to Recovery from ME/CFS & Fibromyalgia, an internet resource from Dan Neuffer (see also his “Five Elements of Recovery” videos)
- Another Recoveree Story – Kate Moody