Guest post: Suzi shares the key elements of her ME/CFS recovery

Key elements for recovery

Many times along my recovery journey, I was told by doctors and believed that I would always live my life with M.E/CFS. That my life would always consist of managing the condition, needing to live differently and experiencing a smaller, limited version of the life I had hoped for.

For 18 years I lived with chronic symptoms, often very severe, where I lived in my bed for 3 years only able to walk to the toilet. Sometimes, light sensitivity was so strong, I’d have to wear sunglasses inside even when the curtains were shut. I didn’t wash outside of my bed for 6 months and, for even longer, my mum washed my hair for me in an inflatable head bath (which I was very grateful to have!)

Now, I am fully recovered. I have climbed the highest mountain in England and the highest mountain in Thailand. I feel free, grounded in my health, liberated in life and I want to support you to feel the same.

I had to believe that recovery was possible so my hope now is to inspire you to also know this, to feel this belief in your bones.

Healing and recovery is a transformational process. Who you were at the beginning is not who you’ll find yourself at the end and what an exciting thing that is. 

Here are some of the key elements of recovery that were integral to my own transformational process:

1. Belief in recovery 

How will something happen if we don’t think it’s possible? How can we stay motivated when things get difficult if we don’t really believe our efforts are going to pay off? How can we see opportunities for healing if we don’t believe they exist?

There are so many questions like this I could ask in the pursuit of this all-important belief. For me, it is vital for recovery for so many reasons. The most simple being that something cannot materialise if we deny the possibility of its existence. Our brains cannot receive the message of hope and possibility and make the neural pathways required for a different reality if that reality isn’t already lying somewhere in our subconscious.

If there is resistance – if you find it difficult to believe – ask yourself why. I asked myself: What would it mean to heal? By not believing and staying where I was, what was I avoiding? What was different about me from other people who have recovered? (I would start to look for the similarities.)

Belief in recovery means we take the power back. We put the possibility and opportunity into our own hands and empower ourselves with what we need to heal. 

With belief, we will look for recovery programmes, we will look for support, we will look for inspiration, we will look for hope. With belief, we won’t give up. What do you need to really believe recovery is possible for you?

Liz note: Stay tuned for my upcoming YouTube interview with Suzi where she discusses what programs and modalities helped her recover.

2. Understanding the states of the nervous system

I believe that M.E/CFS is a mindbody illness, that the chronic symptoms we experience (and in many other illnesses or diagnoses) are the result of nervous system dysregulation. Therefore, understanding what keeps your nervous system dysregulated, in an activated fight/flight/freeze state, is key to healing. 

Understanding stress, pressure, criticism, fear and unprocessed emotions, and how these things affect what state our nervous system is in, allows us to begin to unlearn these patterns, bringing safety and connection instead, so that the body can bring itself into a rest and digest state where it is able to do the healing it needs.

For me, I transformed the state of my nervous system through brain training, somatics and belief work. 

This is another reason why the relationship you have with yourself is so important. Not only because it brings a sense of safety to the nervous system, but also because it enables you to sit with the parts of you that are asking to be heard.

3. Developing a compassionate relationship with yourself

So often, despite the difficult circumstances we find ourselves in with illness, we can be our own worst enemy; self-critical, judgemental, shaming. How does it feel in your body when you speak to yourself harshly? What does it make you feel?

Cultivating a loving relationship with myself was key in my recovery. Along the way I had to embrace self-forgiveness and self-acceptance, and find self-compassion. I couldn’t keep putting so much pressure on myself or believing that I wasn’t good enough.

What do you give yourself a hard time for? How could you speak to yourself more kindly the way you would to a dear friend? What is one small way you could show yourself kindness today?

Reconnecting with my true self, beyond the expectations of others and the world around me, allowing myself to be who I truly am, was a significant part of my transformation. Learning about my needs and my emotions meant that my nervous system could finally begin to feel safe and heard.

4. Keep hope

I know how hard it is to keep going, to keep picking yourself up after setbacks and disappointments. It’s hard. But we can honour that difficulty and challenge AND still keep hope. Just because it hasn’t happened yet, it doesn’t mean it never will.

Hope is similar to belief, except I believe that hope comes from a deeper place within you. From a place burning within your soul, something that you can’t truly extinguish, from a knowing that quietly whispers away inside you.

When I was at my true worst, at my lowest ebb, a rock bottom so dark and deep I never thought I would climb my way out of, I still felt a little burning light. Something that said, ‘keep going’, something that said, ‘you can do this’. Find that place within you.

Watch recovery stories and interviews (you’re in the right place!) to instil that hope in you. Stay away from negative forums or pages who don’t believe in the possibility of healing. Find support and connection from the people who have been on this journey and know what you’re going through. It is all there when you look for it (and when you believe!)

5. Give yourself time

When we so desperately want to recover and to end the suffering we’re going through, it’s understandable we want it to happen as quickly as possible. However, for true, lasting, sustainable change, we need to allow ourselves time. Remember, it’s a transformational process and no transformation happens overnight.

Pressure to heal sends messages of danger to the nervous system so it’s actually counterintuitive to any healing work we’re doing. What we need is for our nervous system to feel safe. To trust that if we ease ourselves into the process, give it the slowness it’s asking for, then our patience will pay off.

That’s not to say healing can’t happen quickly. It does for many people and, at a certain point in my journey, it did for me. However, I believe the sudden return of my physical abilities left some fear within me that didn’t fully heal at the time. Allowing time to heal means you can fully integrate everything you learn into a recovery that will last the rest of your life. Who doesn’t have time for that?

I can’t wait to share the rest of my journey and healing insights with you in my recovery interview with Liz!

– Suzi

I would love to support you with any of the above topics or wherever you find yourself on your own healing journey. Get in touch and find out more information about the coaching services I offer on my website: www.trustandbloom.co.uk.