Seven things that helped me in recovering from ME/CFS

This entry was written as more of a personal essay than a blog post. Grab a cup of tea & take your time. I hope you find it helpful.

A few weeks ago, my friend and yoga teacher Fiona Agombar shared the news that a girl she knew who was struggling deeply in her first year with ME/CFS, had taken her own life. She was 33 years old – the same age I am now. Just last year, before her illness, she had travelled around Australia in a camper van.

I had never met this girl, but I immediately felt a kinship with her. I too was diagnosed with that same illness around 6 years ago, and at a similar age and with a similar backstory of adventures and achievements. Like her, I was devastated by the loss of the life I had known at the hands of this illness, and by the complete lack of hope I saw in my own once sparkling future. I could absolutely relate to how she probably felt in those weeks running up to taking her own life.

Had I had the chance to meet her, we might have talked about this illness. And having spoken to others in the same situation, I know she would probably have asked me how I’m doing now.

I would have said that since those dark two years in the beginning, each year has been a bit better, and work, and travel, and love, and nights out are no longer off the cards. I might have told her I go to dance classes now. I surf. I run a business. I write this blog. I might have told her that the illness is still with me at times, and that’s sometimes frustrating, but that it is also often a helpful warning sign that I am off-course somehow. I would tell her that I’m not sure I would even categorise myself as having ME/CFS any more, which means, I guess, I’ve recovered.

It might have helped. It might not have. As her spirit leaves us here, it is pointless to wonder what might have been.

And yet, there are many others in her place, in the place I was in and she was in, who right now, today, are still with us, and who are still struggling through the hours. I would like to have a conversation with them, you, about some of the things learned over these 6 years since that diagnosis, that helped me navigate myself into a better place.

So I’m publishing this, nervously, out loud. I hope it might help someone. Here are 7 truths I learned, which helped me in my recovery and saw me through the darker times.

1) Recovery is possible

Recovery is possible. Recovery is possible. RECOVERY IS POSSIBLE.

It’s worth saying again and again, because for much of the time this statement feels like the most ridiculous statement ever uttered. The idea of recovery becomes about as likely as the existence of Santa Claus. Like a kind of myth or fairytale. Something that sounded nice and all, but was also utterly unhelpful. ‘Deal with the reality,’ I thought, hearing the same the doctors and the long discussions in ME-related internet forums.

But while it’s true that it’s futile to simply sit and wait for the morning you might wake up feeling fine, it is also a truth that recovery is possible. And I know this, because I have now met many people who have done it. In fact, a critical part of my own recovery was surrounding myself with people who have recovered. I read their books. I went to their seminars and workshops. I marvelled at their stories – people sicker than I was, who were now running yoga schools, or studying for PhDs, or being meditation teachers, or travelling the world.

The recoveries weren’t over-night miracles. They were often the product of years and years of light effort; slowly refocusing and rewinding thought patterns, becoming more mindful, more joyful. Rearranging lives, friendships, influences, homes. Changing habits. Leaving and taking responsibilities. Slowly treading one step forwards (and then often two steps back again) towards forging a different way of being; one that creates better conditions for healing.

I also began to trust, at some level, it could be so for me too. I always felt very sick, back then, but there WERE some days, or at least hours, that were better than others. Which told me, MY BODY DOES KNOW HOW TO FEEL BETTER THAN THIS. It hasn’t forgotten. It hasn’t lost the ability to improve and heal a little, even if only for a few minutes. And if it could do that for a few minutes, who could tell me it couldn’t recover for longer than that one day?

Take that leap of faith. For me, the point where I began to stop seeing ME as something I needed to just live with, and started seeing it as something I also wanted to learn to recover from – no matter how long it took (and it did take years, and sometimes I’m still recovering) – was a turning point in my journey.

2) You are not alone

For me, the profound loneliness that came from having ME/CFS was almost worse than the illness itself. Many didn’t understand how I felt. Some dismissed it out of hand, or confused it with depression, or decided I was ‘just run down’, or concluded it was all in my mind.

And then of course, there was the energy that simple conversation could take out of me. I began to almost fear conversation for that very reason, and tried to find ways to limit one-on-one time with others because I found it so exhausting. Which naturally made making and nurturing connections even harder. And we need connection. We are human. We are social animals. Our souls thrive when with others who allow you to be who you are, however you feel.

You are not alone. There are many others who know how you feel. There are many more who will want to understand. And more still who you can connect with regardless of the ME, through your shared love of…whatever it is you love: music, meditation, film, nature.

Find those people. Your friends. Your family. Support groups. Even the Samaritans helpline (believe me; those guys came to know my voice pretty well). Practice being honest about how you feel and what you need. Say if you’re struggling. Say if you need help. Say if you need a rest, a break, a catchup that’s less about actually catching up and more just being in each other’s company, quietly. Reach out to the people whom you can share your sadnesses and your hopes with; with whom you don’t have to hold up a mask. Those people are out there, and they will love you anyway.

3) Some things can actually give you energy

It can be the biggest surprise to people with ME/CFS that sometimes, they can feel better than others. Sometimes, an activity can actually give, rather than take energy. For me, I found conversation hard. But I could spend an hour or so painting. And often, even if it took a week, writing a 500-word blog post (on this very blog) would fill me with a profound sense of joy that would fill the following days with a warmth and an easiness, even if physically I was still feeling like lead.

Energy flows when you feel easy, light, and content. When you feel open and able to act in accordance with your own needs. Energy can’t flow when you feel obligated or oppressed.

Ask yourself regularly: ‘what would I really like to do right now?’. Tune in to how you really feel and what you really want. If you don’t want to do whatever is facing you that day; if it feels like an obligation or a pressure, and you know you won’t feel better for it, give yourself the option of not doing it. Just the option. Because you might find that when you take that control back, you actually want to give whatever it is a go. Or not, and that’s fine too.

I remember sitting on the sofa at my parents’ house, my body feeling like it had been filled with concrete, and my face so painful from the tiredness that my eyebrow was twitching involuntarily. My mum would come to me and tell me it was time to go to a yoga class. Raising the energy to even stand up felt like it would require an act of superhuman will. But I would drag myself up. I would walk in a mental haze to the class – round the corner from our house. I would get to that yoga room and breathe.

I can’t lie and say it made me feel better. I still felt rotten – my limbs heavy and my eyes sore. But I did have the tiniest ounce more energy than I had when I was sat on that sofa. I held onto that truth — for me doing some light yoga with my mum made me feel like I had just a tiny bit more energy. So keep doing it. Even though it takes a superhuman level of willpower, keep doing it.

4) Approach complementary therapies & nutritional supplements sensibly

Four months into my illness, I remember being so frustrated with the blank look on my doctor’s face that I instead went to a complementary therapy centre for the first time and checked in for some ‘energy healing therapy’. For a full 1 hour (which seemed like an age compared to the ten minutes by doctor could spare), I had the therapist’s undivided attention. She told me my ME was curable, and was caused by some stress-fuelled energy block in my body, and would ask me to close my eyes as she held her hands above me and hummed. She then charged me £70 and booked me in for 5 more sessions. I left feeling sceptical, and hopeful, and hopeless, and a little poorer, all at the same time. I remember feeling like this wasn’t the right thing for me, but I literally had no idea what else to do.

I didn’t go back to her. I didn’t really trust her, and I knew she couldn’t miraculously cure me. But I noticed that just the having someone to talk to, helped. And I noticed that something about what she was telling me was right – that our bodies are more than just skin, flesh, and bone; that our energy can be affected by the way we live; that stress had become habitual for me; and that caring for and relaxing my body was going to be important.

Over the years, I tried acupuncture, reflexology, yoga, meditation, emotional freedom technique, CBT, Reiki, massage. I tried breathing exercises and hypnotherapy. Along the way, I wasted a lot of money – staying with some therapists long after I felt they weren’t helping me. Doing some things – like homeopathy & some of the more extreme ends of nutritional therapy – which I fundamentally don’t agree with or trust, just because I was desperate. Spending a small fortune on stacks of supplements that did nothing for me, or worse, made me feel even sicker.

But I also found some people to whom I now owe much of my health and life. Yoga teachers, like Fiona. Meditation teachers, like the wonderful people in the Triratna movement who teach mindfulness meditation for free at lunchtimes all over the country. The people in the psychology practice at the Optimum Health Clinic. A Bowen therapist who has since moved to Australia, whose wisdom helped me better understand what was happening to me and how to trust myself more. And amidst the plethora of supplements and diets on offer, I found some simple things that helped me, like D-Ribose & laying off dairy for a while.

The journey through complementary therapies and nutritional approaches can be tricky. It’s important to be open to things that might help. But it’s also important to be vigilant about not continuing to pursue approaches that don’t. Only you will know the difference. Trust your instincts.

5) Get a bit spiritual

I grew up in a cautiously atheist family. My mum is the kind of woman who would take me to Sunday school for the singing only, popping me into the church hall only once the sermonising was over and done with. At school, I remember our class visiting a local minister and him asking who among us didn’t believe in god. I was the only one in the class of thirty-two to raise their hand.

And yet, I could not possibly have coped with ME/CFS if I hadn’t put some of my own reason and scepticism about spirituality to one side. By which I don’t mean suddenly attending church once a week (although I did do that for a while). I mean by asking some of the bigger questions that you’re forced to ponder when you have very little you can actually do with your days.

For me personally, it wasn’t Christianity but Buddhism that I found most practically useful as a means to coping with my condition and finding some answers. For a start, the first truth of Buddhism is that life is suffering. Now this was a truth I could agree with. But it also teaches that there is a way out of suffering, which is by accepting what is, rather than craving what you don’t have (like health) or trying to fight against what you do have (like ME). And how do you do that exactly? By practicing acceptance, compassion, and mindfulness. Through that, can come peace.

Compassion and a sense of peace were two things I didn’t feel much of while I was really sick. Developing the spiritual side of myself – reading books by the Dalai Lama, listening to talks by Pema Chodren, learning to meditate – those things gave me the beginnings of a glimpse of a feeling of peace, even in the most painful of times.

Vidyamala Burch, a meditation teacher from New Zealand, has been almost paralysed and in deep physical pain for much of her life. For her, the biggest moment in helping her find peace in the pain was when she realised that she didn’t need to struggle through the night, or the hour, or even the next ten minutes. She just had to get through this moment. And this one. And this one. The moment is all there is, in fact. In the moment, if you can be with it and not fight against it, even in the darkest of times, there can be a kind of exquisite ease.

6) The story you tell yourself matters

So quickly, ME/CFS impacts so many parts of our lives that it’s easy to allow it to define us. ‘My ME/CFS’ – I would say. I suffer from it. It’s easy to feel wronged by it. It’s easy and natural to feel cheated. It’s easy to feel bitter and angered by the injustice of it, sometimes closed to the world that ‘doesn’t understand’.

All that is natural. But it took me a long time to realise that these are feelings to experience, feel and move through. Not feelings to hold onto, harbour, retell and reinforce until the whole of life operates through the ME/CFS lens.

ME/CFS is with you, yes. But it is not all that you are. ME/CFS is awful and painful, yes. But it can also be a teacher and an invitation to live differently. ME/CFS is a daily, hourly, minute-by-minute challenge, yes. But none of that means the present moment can’t be peaceful and light, just as it is.

I remember speaking to a friend who had ME/CFS about that feared moment when someone you don’t know, who doesn’t know about your illness, asks you the dreaded question – “so what do you do?” How do you answer that? “Well…I have ME/CFS you see, so I can’t do much of anything.” Silence. Awkwardness.

For many with this illness however, that answer isn’t a true reflection at all. Yes, I used to think, I do have ME/CFS. But I also practice yoga. I read. I try to be a good friend. I love to learn about current affairs. I, sometimes, on a good day, enjoy walking my dog. I might not work a 9 to 5. Some days I might struggle to leave the sofa. But that doesn’t mean my life is only about ME/CFS. It isn’t only about that.

There are people with ME/CFS who are famous, world-renowned authors. Artists. Coaches. Teachers. Therapists. There are people with ME/CFS who have won awards and acclaim. There are people with ME/CFS who have set up support groups. Debate groups. Painting groups. Meditation groups.

There are people with ME/CFS who for whom just getting out of bed every day is an act of heroism. People for whom writing a text message to a friend on their birthday might take hours of ‘trying to concentrate’. Those people are amazing too.

It might take us longer to do, well, anything. It might mean our goals become smaller and more local. Things that took a few hours might now take a few weeks, or even months. But life is long, and we have time. I remember realising…I could actually walk a marathon, if I wanted. I might take me a year. But I could do it. I could.

The story you tell yourself matters – it shapes the whole way you see your world and your future. Only you can choose what story it is you’re telling and the role you’re playing within it. Are you more often casting yourself as the victim, or the warrior? Are you on a journey towards illness and sadness, or growth and recovery? Have you been wronged by the world, or did the world challenge you in a new and unexpected way?

You still get to choose. You might have ME/CFS, but it’s still your life. Your story.

7) Be gentle with your language, and let go

There are times when the business of recovering from a deeply painful and debilitating illness can, in itself, be a deeply stressful experience. For me, trying to work out how to get through the days was, in itself, layering more and more cortisol and anxiety onto my already struggling nervous system. Unsurprisingly, it didn’t help very much.

One therapist I saw told me a couple of years in that I use the word ‘should’ a lot. ‘Should’, ‘need’, ‘ought to be’. She said to me, “wow, it must be hard being you, constantly on the receiving end of how you talk to yourself.”

What she was telling me, not so subtly, was that I was treating my recovery like I had treated everything in my life. Harshly. With high expectations and high standards and high demands. Telling myself off when I fell short. Telling myself I ‘should’ be doing better by now.

She invited me to think of some other words I could use. Words like ‘I wonder…’, instead of ‘I should…’. Like saying ‘I’d like it if…’, instead of ‘I need…’.

She invited me not to take the ebbs and flows of my illness so personally. ‘That’s interesting,’ she invited me to say when I noticed a new pain or a wave of fatigue, seeing if I could find a way to treat the bad days with curiosity rather than crushing disappointment.

She invited me to let go of the outcome. I might get better. I might not. I might feel stronger tomorrow. I might not. None of that made me any more or less worthwhile as a human being.

I still forget all this at times. I still get caught up in a spiral of ‘whys’ and ‘what ifs’. I find myself scrambling about for reasons and justifications, fielding my own frustrations and accusations.

But then, sometimes, I notice the tightness around my chest, and I see what I’m doing to myself, and I breathe. I form the words, ‘I wonder if…’ in my head. I wonder if I’ll feel better tomorrow. I wonder if it matters if I do. I tell myself it’s all ok, and that this is hard stuff for anyone to deal with, and that I’m doing my best. I feel my body smile a little. I ask myself what I’d really like to do right now, and more often than not the answer is ‘watch the West Wing’, or ‘listen to Radio 4’, or ‘call my mum’, and so I do that. And I stop fighting for a moment, and I feel lighter, and some of the energy returns.

I hope some of this helps you too. This is hard stuff; it would be hard for anyone to deal with. You’re doing your best. Maybe you’ll feel a bit better tomorrow, maybe you won’t. None of that makes you any more or any less worthwhile as a human being. You are always more than your illness, and having your illness make you a hero for even getting up in the morning. And even with this illness, you can still experience peace, and joy, and lightness, and have moments of energy and connection. And all of those experiences are part of the road to recovery.

You can recover. You can. You can.

You can.

 

I would love to hear your thoughts and experiences on all this, if you’d like to share them. Please feel very free to post in the comments below.

26 thoughts on “Seven things that helped me in recovering from ME/CFS

    1. Hi there, I cant actually remember how I came across your article but, in the last nearly 3 years, I’ve had extreme highs and lows with this illness. I recently suffered an emotional breakdown with depression (whilst living abroad) so had to return to the UK where I’m from, I’m only 24 but, I’m so stuck. I live with a family who aren’t all supportive and my room is on the upstairs floor which is difficult. I wont go into it all but, just reading snippets of your story every now and then is encouraging. Thank you 🙂 X

      1. Hi Natalie,
        How brave of you to live abroad. I can very much relate to how hard it is having to come home, move back in with family who struggle to ‘get it’, particularly after an emotional breakdown. I know what that’s like. I’m really pleased this post is helping a bit. I remember my parents really not knowing how to help me – wanting to, but not really knowing how. My dad would tell me I couldn’t really have ME because I was able to get out of bed. And my mum’s first reaction was to try to cheer me up with Mamma Mia! It’s only looking back on it now I realise how lost they were too; not knowing what to do; not knowing whether it was best to tell me to buck up or to leave me be. Strangely enough though, over time, we all got a lot better at it. I got better at being really honest with them – crying when I needed to; trying to find the words to tell them what seemed to help me and what didn’t. I started to see their support in the things that usually infuriated me, like my dad suggesting I go for a walk, or my mum waking me up at 8am even when I hadn’t slept well! We were a hardy Northern family who didn’t really talk about our feelings a lot. Strangely, me having this illness meant we all had to practice talking about how we felt for the first time. And strangely, over time, it brought us closer than I could ever have imagined. We became not just family but the best of friends. I’m not sure if that helps at all, or if that’s the case with your family, but I hope that maybe this hard time you’re experiencing could maybe be the beginning of something. In any case, I wish you all the absolute best in your recovery journey. It will get better. In time. It will. 🙂 x

  1. thank you, it was lovely to read your experience. I was diagnosed long ago before blogs were invented. Like you I feel like I have probably won, although I doubt I’ll ever be completely sure of it. ME/CFS isn’t something I think about very often – partly because I’m still a little frightened of the time when I stopped eating or when it took so much strength I would sweat all over as I crawled the long arduous journey out of bed and a few feet away to the toilet, resting at intervals along the way, closing my eyes when looking around used more energy. I am aware of some lasting traits I have – I am still quite short with people when my energy is low – for so long I got so used to saying the minimum number of words, quickly and quietly because speaking was such an effort – and fearing the other person might not hear and would want me to repeat myself. I’m sure there are many other ways in which the affliction has defined me and for some years I always thought they were all negative things. Then I finally met someone else with ME, someone who had suffered much more than I had. She seemed truly inspired that I had come through it and was able to work full time with a responsible job and a long commute and still have time for a happy marriage and even some hobbies. A few years later and she too is achieving more and more – with big ups and downs along the way, like any of us, but still achieving.
    Like me she found yoga was helpful – I do wonder if meditation was also easier, or at least more natural for me because of ME/CFS – I was already subconsciously well practiced at regulating the energy levels to my mind. Slowing down of my thoughts had been inflicted on me but may have helped me too. There was a serene familiarity to it.
    I’m not sure I really have anything to add to your blog except that for me the thing that kept me going was remembering at the lowest times that they are just that and generally things will always get better, despite how it seems. We all have ups and downs, we are all empowered and held back by our bodies. We have to accept it and serious illness is often the route to this understanding. I’m sure there is a way that disease like ME/CFS is a kind of gift, even when suffering at a young age – making us so much more aware of these important truths without taking away hope of living a normal life again. I may not have the energy I would otherwise have had but I do have so much more appreciation for the able and useful body I have.

    1. Thanks so much for commenting and sharing your experiences, Simon. Really good to hear. ‘I feel like i have probably won’ – that’s it exactly. And I know what you mean about the small ways it affects your way of being. Being conscious about how I use and where i get energy from has actually changed my personality, it seems. And yes, you are absolutely right – serious illness is so often the route to deeper understanding. I wouldn’t give that up for all the energy in the world. Thanks again for posting.

  2. Thank you for this. Amazingly a lot of what you say can apply to any mental health illness, stress, depression or even coming to terms with a break up. I wish you a maximum of happy and energetic days. Xxx

  3. I’ve been having a kinda bad few days energy-wise so was planning to wait to comment on this ‘when I was feeling a bit better’, when on a good day it takes a lot less effort to be insightful, witty and lucid as opposed to the days when it can be almost too much effort to speak at all. But I am commenting today, despite this, as it is just so characteristic of my CFS- the flow of good days and bad days, and the … compassion, patience, acceptance and knowledge that whatever you do is enough… needed on the low-energy days. Your essay resonates with me on so many levels- the desire to be around other people but the difficulty as conserving energy is so precious/ the knowledge that if you can just get to the yoga class/onto the yoga mat you will feel a bit better, but sometimes it is SO hard to get there/ the dreaded ‘What do you do?/ What are you up to these days? questions… I feel your words are in some ways speaking aloud my experience with CFS over the last year or so, and it is so helpful to read these supportive words (and gives me courage and inspiration to write about my own experience when I am ready). Without a doubt my most used words of 2014 have been ‘energy levels’, often in a negative context. The words ‘Recovery is Possible’ resonated through my entire being- perhaps I will make these my words for 2015. Thank you for sharing your experience with such honestly, vulnerability and insight, it is a huge help to me, and many others I’m sure. Wishing you, and everyone else who is on their healing journey from CFS/ME the conscious cultivation, enjoyment and acceptance of our health x

    1. Thanks for commenting Emma with such honesty and warmth. It’s more than enough. Wishing you all the very best for your recovery journey in 2015. x

  4. Just to say – thanks so much to everyone who has read and responded to this post. I am quite overwhelmed and very much appreciate it. I’m so pleased to hear that my experience resonates with others. See; we’re not alone 🙂

  5. That was such a beautiful post. I really hope one day I can be where you are. After 6/7 years of the illness I’ve had a complicated relapse and am more poorly than ever. The fear of not recovering and depression are overwhelming just now but I’m working on acceptance and I’m inspired by your words.

  6. Groups of people, whether or not they are experiencing M.E/CFS or other conditions, are sharing your article. I remember feeling hopeless and lost when I had a bad relapse and I’ve spoken to many others who have felt the same. I struggled to come to the realisations that you talk about here and found it difficult to speak with others who were going through similar situations. So thank you for writing this, being positive and thinking of others. Hopefully, with more shares, your message will be spread and people will be kinder to themselves. Every word and point is just spot on and brings inspiration 🙂 Wishing you a very Happy New Year x

  7. Thank you for this. I read the Secret by Rhonda Byrne and this allowed me to believe that it was possible to recover. I had used a wheelchair for 18 years. It took me 6 months to recover and am still recovering. I started walking and did a little more each day, I increased it and got up to 16 miles at my best.

  8. Wow, nearly in tears, thank you for sharing this- so bloody important for me and for others to hear. I relate so much to much of the way you have thought, felt, all of the visits to ‘therapists’ and money on supplements. Right now I’m at a cross-roads with my well-being, I can feel that strong pull towards ‘why’ and ‘this needs to be sorted’ and more money and visits to therapists to find an answer. But I know I’m creating more and more cortisol. I recall the fear of wondering if I would ever go and do anything ‘normally’ again, if I would travel beyond the local Doctors clinic. That kinda fear really woke me up and I started asking the important questions, like you mentioned. My old ways try to creep in, when I get some energy I want to use it…and I suspect, sometimes, abuse it. I will be reading this again..and again. I’m off towards mindfulness, agreed Buddhism stating that life is suffering is awesome and true and damned attractive in terms of being able to connect with spirituality.

  9. Thank you so much for writing this – while I don’t have ME/CFS I suffer from a condition called Hypermobility Syndrome, and what you’ve written describes how I often feel too. It’s a good reminder to know that we can do so much, but it’s a case of being mindful about the way we treat ourselves and our minds when we’re having bad days as well. Thank you so much for writing this beautifully honest post. I really appreciate it 🙂 xo

  10. Thank you so much for writing this. A really beautiful reminder of some things that are so important but are really easy to lose sight of in day-to-day life with M.E. This was exactly what I needed to read today! I think I am going to print this out, thank you again!x

  11. As so many others have said above, I totally relate to every word you have written here. It mirrors my experience with ME/CFS so much I could have written it. Even down to the little things you mention such as watching West Wing, listening to Radio 4 and calling my Mum. I did exactly the same. I even printed out the words You Can Recover You Can You Can You can and stuck them around the house to help me keep believing that recovery was possible. And like you. I am so much better now, I wonder if I still have ME/CFS I’m so much better but then as you say sometimes it serves as a reminder or wake up call to keep me on course and not doing too much. Thank you for sharing this post. For anyone in the midst of ME/CFS I hope it inspires them and gives them hope. Keep well. Jess.

  12. A really well written blog. You voiced how to approach the illness beautifully. I’m sure this will be of great help to many who read it – a great source of hope and courage – as it has been for me 🙂

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