Why I believe I got Sick again after making a Full Recovery from ME/CFS – Part II – The Lessons Learned

May 17, 2016 7:27 pm

Part II

A few weeks ago I shared a post that was a personal one close to my heart, I spoke about why I believe I got sick again after making what I thought was a full recovery from CFS/ME. If you missed this post you can catch up on it here.

This week, I am going to share some of the lessons I have learned from my experience of relapsing so severely and having to face life with a chronic illness for the second time. Going through something so life changing, where your world literally crumbles around you, gives you no choice but to dig deep. Especially when you feel you have already been through the exhausting process of climbing the mountain back to health once before.

Some of the lessons and insights I am about to share have emerged over the last few years as a result of many hours soul searching and unravelling the reasons why I believe I got sick again. They have helped me begin to move towards a healthier, happier version of myself and serve as a wonderful foundation to my current healing journey.



The Lessons Learned


1. Establish your Boundaries.

This is such an important lesson for all of us to embrace, especially those of us on a healing path. Learning to set boundaries, listen to your own needs and allow yourself to say no unapologetically.

During my ‘recovered’ years, I had no boundaries. By this, I mean I was a typical people pleasing person. I said yes to everyone and hated the thought of letting someone down. I was afraid of saying no.

I burned the candle at both ends trying to juggle too many different things and too many different arrangements. I tried to be the perfect friend/daughter/colleague/therapist and wanted to keep everyone happy (which I now know is an impossible feat)

Learning to say no and in turn, respect my own needs, has been a huge life lesson for me. I now realise that saying no needn’t be a mean, nasty thing (how my subconscious mind once viewed it hence my avoidance of it), it simply means respecting your own heart and self. There are obviously going to be times in our life when we have to do things we don’t want to do, this is part of being human! But there is a difference between this, and saying yes to everyone all the time.

It’s okay to say no.


2. Respect your Self Care Regime and the things that Lift you Up

The things that heal and nourish you, shouldn’t be abandoned once you reach ‘full health’.

I learned this lesson the hard way. Once I had got my health back, I felt like I was invincible. It was is if my mind thought ‘right thats that over with, now lets get on with living a normal life’ As a result of that, I didn’t prioritise the things that helped me heal in the way I once did. In some ways, it was nice that I had that confidence in my body, clinging on to old limiting beliefs is never a good thing, but some of the things that I ended up doing as a result of that confidence, didn’t serve me in the long run.

My Daily juices and focus on a healthy diet went out the window. I often intended to juice or make a healthy meal, but other things ended up taking priority and I would often grab a sandwich on the go. My Yoga and Meditation also took a back seat and rather than being a part of my daily life, it became something I did occasionally.

I now realise, that the things that heal us and support our body and soul, are things to be incorporated into our daily life, whether we are healthy or sick. The things that nourish me, I now have a newfound respect for and they will continue to be a part of my life long after I heal.


3. Become aware of your underlying patterns such as The Achiever.

This was a big one for me, and something I am still challenged by and have to keep and eye on to this day. The Achiever Pattern. I would describe the achiever pattern as a tendency to push yourself hard and drive yourself into the ground. When I’m in my achiever pattern, I define my worth by what I can do, rather than by who I am. A sense of validation and worth comes from external achievements.

As you can see, living in this state isn’t a healthy way of being and is a common behaviour pattern in a lot of people with ME/CFS, many of us have literally pushed our body to the extremes until it breaks down.

Being aware of this tendency, means that you can begin to change and re look at how you treat yourself.


4. Know that Rest and Downtime are part of a Healthy Balanced Life

During the years when I was well, I associated rest and downtime with illness. I think there was a big part of me that feared if I let go and relaxed on the sofa, a big black hole would swallow me up and I’d fall back down into the depths of illness once again. In actual fact, this couldn’t have been further from the truth. If I had taken more downtime and allowed myself more rest, I may have been able to maintain my health.

I now realise that rest and down time are part of living a healthy balanced life.

After you have lived with a long term illness, you can lose your sense of whats normal.

Rest is normal!

Sofa time is normal!



5. Learn to Live in your Body ~ The Healing power of Embodiment.

For so many years I didn’t know how to live in my body. I know that might sound like a strange thing to say, but its true. I spent most of my time living in my head immersed in thought and in my physical world I spent my days racing from one thing to the next. I guess after so many years being unwell, there was still a part of me that feared my body, after all, it was my body that had caused so much pain in the past.

I was in a state of complete disconnection from my body as the years went on. I feared any return of symptoms, so when they began to arise again, rather than slowing down and listening to what my body was trying to tell me, I pushed them away and literally pushed on through until they eventually got to such severe level that I had no choice but to listen.

I also had severe symptoms of dissociation and depersonalisation on a pretty continuous basis, two very frightening sensations that can lead you to feel as if you are disconnected from your body and surroundings. It is a common thing to experience in times of anxiety, high stress, trauma and also exhaustion. Its not often spoken about and I think that in itself makes it all the more frightening.

I now know that this was a side effect of how hard I was pushing myself and a clear sign that I was quite literally, afraid to be in my body.

One of my most valuable lessons has been learning how to respect my body once again. To realise it’s a part of me and a safe place to live. I listen to the messages my body sends me now, with gratitude and realise symptoms are simply a way of the body communicating with us. I have used mindfulness and meditation to help me learn how to live with a sense of grounded connection to my body.


6. The Importance of Self Compassion

Self Compassion wasn’t a term I was even aware of until recent years. I never really thought about how I treated myself, but as the last few years have progressed, I have come to realise that for a long time, I didn’t treat myself too well at all. I would push myself hard, set unrealistically high expectations and berate myself if I didn’t do things perfectly. A fantastic coach that I had quite a number of sessions with about a year into my relapse, helped me begin to become aware of the concept of self compassion and I’ve never looked back.

Take a moment to think how you speak to yourself. Do you speak to yourself kindly and with love? Or do you beat yourself up over the smallest of things.

If we are to lead a healthy life, one of the first things we need to do, is nurture our relationship with ourselves, and this starts with self compassion. A great book on this is ‘The Mindful Path to Self Compassion’ by Christopher Germer if you are interested in looking into this further.


7. True Happiness doesn’t come from Material Things or Achievements

During my well years, I got swept up in a world where I kept wanting the next thing. I was ambitious, and that ambition mixed with a high achiever personality type, meant that once I got one thing, I was straight onto the next. There was an undercurrent of dissatisfaction running through my life and I realise now, I was looking for happiness in completely the wrong places.

Since getting unwell again, I have developed a deeper sense of what really matters. Living life at a slower pace, with time to smell the roses, is what brings true happiness in my opinion. Having time to spend with those we love, without rushing around cramming too much into your day.

When you are chronically ill and spend a lot of time at home or in bed, you have to learn to look for happiness in the small things. Such as the smell of fresh air when you are able to go for a little walk, a hug from a loved one or the beauty of a pretty flower. These things are all to be valued and cherished and I’m glad I’ve had the opportunity to re assess the way I was living my life for this reason alone. Living from a sense of connection to your true self and values also is key when it comes to happiness which brings me to my next and final point…..


8. Connecting back to your Soul and Authentic Self

Sometimes, I think illness comes to us for a reason.

For me personally, as you may have gathered from my previous post and some of what I have written in this one, I had become disconnected from my true self in many ways. I was living a life that wasn’t in line with my true core values or my authentic self. My experience of illness has stripped me right back, and made me begin building my life from the bottom up.

Having to learn to find a way to surrender to the darkest of days, when I couldn’t even sit up unassisted or open my eyes for more than a few moments at time has a way of making you reassess things. When you go through something that shakes the foundations of your world, you can’t help but see things a little differently.

This experience has connected me back with my authentic self and put me back on what I believe to me my destined life path. This may seem a little ‘out there’ for some of you, and thats okay, feel free to scroll on past this point if that feels right for you, but for many of us, tough times and chronic illness has a way of waking us up and shining a light on some of the ways we have been living that may not have been serving us too well.

Being connected to your soul and living from a place of authenticity where you are free to express yourself, value your own needs and live a life in line with what really matters to you, is one of the most important things we can do to help ourselves live a healthy, happy, balanced life.



With love,






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  • Carly says:

    Beautiful as always my lovely friend. xxx

  • Susan says:

    Wonderful dear Mma!

  • Teresa says:

    Amen to all of that! 🙂

    The soul connection is the biggest one for me. I feel like I actually wither up when I’ve lost it. I let it go for years without being aware how much I was disconnected from my truth. Waking up to how important it is to my life has been the biggest blessing from falling down the rabbit hole of lost health.


    • Emma ~ Consciously Healthy says:

      Thank you all so much for your lovely comments. Was a real pleasure to share this post with you all, I knew so many of you would resonate as a lot of us are on such similar paths.

      Teresa – The soul connection is the biggest one for me too I feel. One of the biggest gifts that has come from this latest experience with illness for sure. Huge love you as always kindred spirit 😉

  • Els says:

    So true! Thanks for these beatiful insights…

  • Teresa says:

    Great writing!! Thank u!!

  • Tanya says:

    Bless you .xx

  • Insightful and beautiful writing and so many deep truths for me to keep in mind in my own recovery from CFS x

  • Emma says:

    Thank you so much for your lovely comment Suze. Really glad to hear that it resonated. Emma x

  • Anni says:

    I really needed to read this today. Have gone from an educated and experienced worker to someone at an agency interview today who could barely speak. I sounded drunk. It was deeply embarrassing. That feeling of desensitization is so strong. I am so ashamed that this is my life. Have cfs and fibromyalgia vit d deficient bur still feel like im letting everyone down. My family dont understand. That living in mind and not bofy comment. Omg so resonates.

  • Louisa Catharine says:

    I know I have said it before, but so glad we me through IG and reading this post, I can relate even more. Looking forward to hearing which part of Lanzarote you were in. LC xo

    • Emma ~ Consciously Healthy says:

      Hi Louisa!

      So lovely to see you here. I’ve sent you a PM over on instagram. Look forward to chatting some more. Emma x

  • Linda says:

    Thanks so much for this, Emma! So needed this reminder today. Am on the long road to recovery from CFS, but having investigations for other health stuff too.
    Resonated with everything you have said.
    Am working on rebuilding a relationship with myself based on love.

    • Emma says:

      Hi Linda

      Sorry for the delayed reply, Ive only just seen your comment for some reason. I’m so glad you enjoyed the blog post. Its a long road to recovery isn’t it, but it is so possible. People heal every day from all kinds of things, we have to just find our own pieces to our puzzle in order to do the same. Self love is so key as we do this.

      Sending a hug…

      Emma x

  • Emma says:

    Hi Linda

    Sorry for the delayed reply, Ive only just seen your comment for some reason. I’m so glad you enjoyed the blog post. Its a long road to recovery isn’t it, but it is so possible. People heal every day from all kinds of things, we have to just find our own pieces to our puzzle in order to do the same. Self love is so key as we do this.

    Sending a hug…

    Emma x

  • Ste says:

    Wow amazing blog. I relate to this so much. I completely recovered myself only to have a relapse after 5 years this month. I don’t understand how it’s happened but I’m housebound again and this has brought me real hope and encouragement. I don’t honestly know how I recovered unkind of just enjoyed life more and took things easier. Could you please share your diet you used to help your recovery? Hope everyone is well take care.


    • Emma says:

      Hi Ste,

      Thank you for your message. Really glad to hear this post has given you some hope and encouragement. Maybe as the weeks progress it will become clearer to you why you relapsed, or indeed what lessons you may need to learn from this. The main thing I can advise is to be super kind to yourself. Our body’s have such innate wisdom, be gentle, rest and listen. And remember (as I always remind myself!) if you have recovered once before, you can do so again!!

      I am not totally sure which diet you refer to. The one I was on in the very early years of my first bout of CFS was the Anti Candida diet. I have also tried low G.I. Sugar Free. Gluten Free. Paleo! We are all so different and its about finding what is right for us personally.

      I share some of my latest discoveries in the four part series I wrote at the end of last year. Especially in Part Four. This may be of interest to you Ste, its called “the Digging Deeper Series’. if you scroll down the posts you’ll find it about 8 posts down 🙂

      Take Care


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