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.