Leisa

What do you think has helped or inspired you during your recovery?

I tried every approach under the sun, spent thousands, and the only thing that has worked for me has been Mickel Therapy.  Mickel Therapy seeks to address the root, not just treat, or ease, the symptoms, and it has taught me to view dis-ease in a completely different light; appreciating the links between emotions, stress and physiology.  In short, it seeks to draw a distinction between the thinking brain and the core emotional mid-brain or body which generates emotions independently of thought.  The therapy teaches folk to translate their symptoms back into emotions and take corrective action so the symptoms no longer need to occur.

Think of it like this – If you were to sit on a pin, your body would send you clear messages of pain.  You could try thinking positively, tell someone you were in pain and you might even cry out, but until you listen and act and remove the pin, only then can your body get the message and stop sending the symptom.  Emotions are pain and we need to acknowledge, accept and act upon them, otherwise they can manifest physically.  Mickel Therapy taught me to understand these useful messages from the body and translate them into action, and eventually my body no longer felt the need to send symptoms because I was tuned in, listening and embracing my authentic self.

In addition to using the tools Mickel Therapy offered, I feel an unwillingness to accept that I couldn’t recover despite all the controversy surrounding the condition.  Sheer persistence, determination and motivation to never give up, no matter how many setbacks I had, also in time, led me to the path of wellness.  I was also really inspired by other recovery stories and I made a conscious effort to focus on these glimmers of hope, and not the alternative.

 

What kind of support did you experience?

I will make an effort to focus on the positive here, whilst at the same time, not denying the less positive experiences that I had.  There is an undeniable undertone of misunderstanding and judgement, from all directions, that you have to deal with when you experience this condition which can be extremely challenging.  However, if you look hard enough you can certainly seek out the light, and then the light seeks out you.  There are always kind open minded folks out there, you just have to find them.

I eventually sought out one doctor, Dr David Mickel, who I felt fully understood CFS/ME, and most importantly I felt that he 100% believed in my full recovery from this devastating and debilitating condition.  All you need is one person.  One person who commits to guiding you, to believe in you and your health, to not treat you like a burden, to not question your experience, to ‘get it’, to appreciate the physical battle that you face, day in day out, and of course to offer you the correct tools and knowledge to find your way out of it, little by little, step by step, no matter how long it takes, and no matter how many setbacks you have.  I will be eternally grateful to Dr David Mickel, his willingness to invest whole heartedly in me and my recovery, his open mind, his kindness, his compassion, his friendship and good humour throughout it all, and of course for offering me the correct tools and knowledge, for me, to recover my health.

Conventional medicine certainly played its part, providing me with the correct medication if I had an active infection, attempting to ease some symptoms, like pain, giving me the option to be signed off work.  However, on the whole, I must admit, the support I was offered, or lack of it at times, especially in the early days, often further added to the trauma and despair that I felt.  From my perspective, there is clearly a desperate need for medical professionals, especially GP’s, to be upskilled in these types of conditions as the genuine lack of understanding, and high levels of disinterest by some, is somewhat traumatic when you feel so desperately unwell, and this undoubtedly adds stress to the body and evokes feelings of complete and utter helplessness.  I do appreciate that the purpose of this project is to showcase the positive in terms of recovery which I fully respect, but I feel it’s also important not to shy away from the painful truths surrounding this condition. For me, raising awareness of these raw core issues is a very positive step in the right direction as without awareness, no one can take responsibility.  Awareness is always the first step in any change cycle.

Those around me supported me in the best possible way that they could, with the knowledge that they had at the time.  I am grateful to every single person that offered compassion, unconditional love, and brought some light to me on my darkest days, and I appreciate that it can’t have been easy.  Everyone around you is effected by your health; a heavy burden to carry.  My mother especially has always tried her very best to do whatever she can to help me on my journey to health, nothing but kindness.  However, despite the good support I’ve had, in time, I have ultimately come to the realisation that you really have to befriend, love and support yourself, as no one can walk the path for you.  You have to go within to find the answers.  A harsh, but empowering lesson. It’s not a negative, simply the reality.  At the end of the day, I had to save myself, and only then could I start to find peace and feel at home in my own body.

 

Did you have a favourite song, book or podcast that you read or listened to?

My mission was to fully recover and so my book shelves are very full of health related/ healing books!  All these books, and many more, gave me hope and nuggets of wisdom that I used on my own healing journey.

The books that immediately jump into my mind are:

Recovery from CFS: 50 Personal Stories by Alexandra Barton

CFS, ME and Fibromyalgia: The Long Awaited Cure  by Dr David Mickel

When the body says No. Exploring the Stress Disease Connection by Dr Gabor Mate

F**K it: The Ultimate Spiritual Way by John C Parkin –  Great for helping to face the fear of symptoms and take leaps of faith into the unknown!

 

Is there any advice you would give to someone going through CFS/ME?

I honestly feel like I could write a book at this stage, but I will try to summarise and prioritise:

1. Never, ever, give up hope – even just a thread of hope is a very powerful thing.  There was always something in me that just wouldn’t give up the fight for more, no matter how many times I got knocked back. Whole heartedly believe in your full recovery, even if it’s very gently and quietly.  Feel it, see it, aim for it, every day.  However, at the same time, appreciate that recovery is a process.  It takes time, and you don’t have to do it all with grace.  Accept where you are for now, while gently striving for more.

2. Keep an open mind – you just don’t know where it may lead.  Be open to what may help.  Do your research, and commit to tools and methods that truly resonate with you and your life experiences.  You are your best guide, check in with you, and go with what feels right.  Trust your intuition.

3. Invest in a good guide – don’t try to go this alone. When you’re in the midst of it, you probably cannot see the wood for the trees, no matter how much insight and knowledge you feel that you have.  Seek out a guide that can hold your hand and help you find the quickest route out of the dark tunnel.  Surrender to receiving guidance.  We all need guides, but choose and listen to only the right ones for you.

4. Feel your way forward – get in tune with your day to day, moment to moment, emotional experiences.  Listen to the gentle whispers of your body. Ask yourself; if my body could speak to me in words, what is it trying to communicate to me?  The key, for me, was to listen, accept and act on my truth.  Emotions are just energy in motion. If we suppress emotions they place havoc within our bodies. Feel. Feel. Feel, and act.  Release the emotions and release the stuck emotional energy.

5. Acknowledge and address trauma, past trauma, and the trauma created by chronic illness itself – this may not apply to everyone, but if you have past trauma that you have buried, I would advise that you acknowledge what’s there at the core; the pain, the sadness, the grief.  Remember, there is strength in vulnerability.  You may not need to go digging real deep, but appreciate how it has shaped your way of being, and use this knowledge to guide you in today’s actions.  I have certainly found that you can heal some of the past by dealing more healthily with today’s emotional experiences.  Enough to be gifted with a healthy energetic body anyway.  For me, it was also extremely helpful to acknowledge that having experienced chronic illness was, in itself, very traumatic, which created layer upon layer of trauma.  Find ways to work through this.  It takes time.  Be gentle with yourself.

6. Face the fear, and do it anyway – hold fear in one hand, and courage in your other. At many points in my recovery I had to take leaps of faith into the unknown, I never felt physically ready for the next step, but I did it anyway (within reason of course, and with support), and this, for me, was key to rewiring my body and mind for health.  Aim high and believe in yourself, and in your dreams. You can do it.  Small steps.  Don’t settle. Don’t compromise.  Be brave and courageous, modern day warrior.

7. Purpose and meaning – seek out your true purpose and follow your joy.  Follow the flow of energy, even if it doesn’t always make logical sense.  This is a long and on-going process, but aim for the gold at the end of the rainbow.  You will know when you find it.

8. Connection – we are wired for connection.  Seek out your tribe, your healing partners, the ones who connect to the depths of your soul.  You’ll be surprised who shows up when you open yourself up to the possibilities.  These folks will give you strength and hope.  We don’t heal in isolation.  We heal in community.  There are those who help you practically, and then there are those who help you on a much deeper level, both are important and necessary to move forward.  There are also those who will show judgement, and even some that will dismiss, or not even acknowledge what you’re going through, on any level.  It is important not to get too caught up in this, and ask yourself if you really need their understanding and support to get better?  Simply let go, and focus on those who lift you up and invest energy and time in you.

9. Balance is key – energy just doesn’t come from what you eat.  Energy comes from people, places, experiences, environments, what your read, what you expose yourself to, and balance is key.  Choose wisely, every day.  Aim for balance.  Aim for variety.  Aim for all the good stuff – joy, peace, energetic flow.  It’s key to sustaining health and energy.

10. Full healing is certainly possible, but it is not a one off activity – last but not least, recovery is possible, it can be done, but please be mindful that healing it not a one-off activity.  As touched upon already, chronic illness is traumatic in itself and so commit to a life of self-compassion and kindness, it’s the only way forward, in my experience.  Once you reach wellness again, stay humble and don’t forget the lessons you were taught, no one is invincible, try your hardest not to fall back into old habits, always remain true to yourself. The alternative is very painful. When you have reached the top of the mountain, to be thrown off again, and find yourself half way up the path, disorientated and a little lost, is rather soul destroying.  You will find your way back up to the top again, of course, but it will be a little messy and rather excruciating; trust me. To avoid this, the key is to keep listening and keep acting, every day, always.  Prioritise your health.  No compromise.  Nothing is worth more, absolutely nothing.

 

I appreciate that my story, my thoughts, my experiences, and the advice I have to offer may resonate with some, but not with others. Everything I have written is simply based on my own lived experience.  I would be delighted if it is of help to someone else, but I fully appreciate we are all so unique, and so are our healing journeys, and I fully respect that.  Please take from this anything that you wish, and feel free to leave the rest.

 

Have you learnt anything that otherwise you may not have had an awareness of?

Of course, it has been the greatest teacher I have ever encountered.  As painful and as heart-breaking as it has been, without the experience of this dis-ease, I would not be the person that I am today.  It shakes you to the core, and it changes you, without a doubt.  It has given me a profound insight into what it is to really suffer, to be vulnerable, to feel painfully alone, to feel utterly dis-connected, to be strong, to really thrive, to deeply feel, to be connected, and to be truly authentic.

It woke me up and gave me an in-depth awareness of myself, my true nature, my rich emotional experiences, my sensitivity to life, and energy.  It’s forced me to deeply connect with my heart, my body, and my mind.  It’s brought me back to myself, time and time again.  Ultimately, it’s led me to a place of self-love, acceptance, emotional empowerment, and in the end; freedom and energy.  It has filled me with a solid belief in infinite possibility, and for that I will always be grateful.  Seeing it as a teacher, and learning from it, for me, has been the only way to endure it, as without being open to these deeply embedded lessons, it would be nothing but suffering.