Photo by Sarah Dorweiler, Evano Community (https://evano.community)
My Story
A Journey of Discovery & Recovery
My Diagnosis and the start of my recovery journey
“Your illness does not define you. Your strength and courage does.”
This quote - along with many others, helped me through the first phase of my diagnosis of Chronic Fatigue and Fibromyalgia. The Consultant Rheumatologist I was seeing had suggested that I would not get any better, that I would likely find myself in a wheelchair before long, and that things could and probably would get a lot worse.
Alongside this diagnosis, it was also suggested that I was suffering from depression. If you have had depression, then you will know what it feels like - I had depression a long time ago, and I knew in my heart that this wasn’t the same. I didn’t know how to categorise how I was feeling, I just knew that I didn’t recognise who I was anymore.
I was scared, lonely, and everything I thought I knew about myself had fallen away, sinking down into the deepest pit of despair.
A mother to four teenagers, a wife, and a manager of a GP practice, I had considered myself to be someone who set goals, got things done, someone who was determined that her family would have more in life than she had as a child. I had prided myself on being an advocate of Kindness and support for so many.
All of the qualities about myself and my personality that I had relied on for so many years, had now failed me. I considered myself:
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Overly Responsible
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Driven
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A Perfectionist
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Conscientious
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Reliable
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A People Pleaser
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Setting a High Expectation of Self
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These traits had all got me to where I was at that point, and on their own they are not an issue. What I now know, is that when taken to an extreme, when you don’t have a cut-off switch, they become your Achilles heel. I used to acknowledge myself through the following labels:
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A daughter
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A wife
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A mum
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A daughter in law
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A homemaker
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A manager of a GP practice
But the one label that was missing was:
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This is me
This was me in 2007, when I was first diagnosed with Chronic Fatigue and Fibromyalgia.
This is me in 2022, after my journey to recovery
Putting a Plan Together for Recovery
With no direction or plan in mind, I started to research my recovery options – because of course I wasn’t going to let anybody tell me 'I couldn’t!'
I will admit I spent a lot - and I mean a lot of money on my recovery. I started with Nutrition, Supplements, Holistic Therapies, and courses that promised recovery, I was desperate for any chance I could get my hands on to improve my situation. Sadly, none of these worked in isolation - but what I did start to discover, was that if I focused on several areas in tandem, then things did start to slowly shift.
Reviewing conflicts, triggers, past traumas, old wounds from my childhood, and doing numerous online questionnaires on personality all helped me to slowly understand more about myself. I also discovered that I possessed strengths that I didn’t previously appreciate, and this culminated in me finding a recovery process called The Chrysalis Effect. This process focused on the following areas:
8 Elements to Wellbeing and finding my ‘Why’
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Emotion
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Nutrition
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Lifestyle and Pace
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Environment
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Relationships
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Movement
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Life Purpose
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Thyroid and Adrenals
Finding My Power
I read prodigiously and devoured so many books on psychology, coaching, emotions, spirituality, The Inner Child, Anatomy, Physiology, Metaphysical, PTSD, Trauma, Adrenals, Thyroid, Nutrition, Sleep, the world within, the world without, Polyvagal Theory, Internal family systems and on and on and on.
The latest books that I am reading are:
The Untethered Soul
-Michael Singer
The Practice of Embodying Emotions
- Raja Shelvam PHD
Coping with Breast Cancer
-Dr Sarah Swan
The Journey
- Brandon Bays
Counselling Cancer Patients
- Ethel K. Zimba Siwila
The Salt Path
-Raynor Winn
If you could see my bookshelf, it is like a road map of my recovery journey!
My Beliefs and Childhood
I didn’t know about Adverse Childhood Experiences, or the term Dysfunctional Family Environment – but it turns out it is exactly the environment I grew up in. I have come to realise that what I considered ‘normal’, was actually far from it. Growing up, we were complicit in hiding what was going on - the secrets that we kept, both from each other and from the outside world caused us to move around a lot. Family was hugely important to me, but both of my parents were career orientated so we probably didn’t get the level of nurture and attachment that we might have received in a different environment.
As children, we also witnessed physical and emotional abuse, and we believed what we were told:
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I’m a disappointment
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I’m a bad person
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There is something wrong with me
This resulted in me feeling that:
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I’m not good enough
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I’m not worthy of love
I feared conflict, abandonment - I certainly didn’t feel good enough. I thought that if I put everyone else first then I couldn’t be found wanting, but of course it didn’t work. As a teenager I ended up isolated, not confident, and had very low self-esteem, to the point where I hid the fact that I was a girl in case boys looked at me and had my eyes constantly fixed to the floor. I didn’t feel as if I deserved to be happy as I was such a ‘bad’ person - after all, who would want anything to do with me?
I met my now husband at 16, left home and school at 17, and by the age of 19 I was pregnant with my oldest son - still a child myself in so many ways. Life was hard financially, but we were happy – I still had little confidence, but being a mum was my world. We went on to have three more children - all boys! It was very busy and although we didn’t have much, we had each other.
We still faced many challenges from my parents, which was still impacting on my mental health. I covered up how I was feeling by cutting off my emotions, being very practical, keeping busy, always having a project on the go, or looking after my in-laws or grandparent(s). It was around this time that my health challenges started. After being diagnosed with pre-cancerous cells I ended up having a hysterectomy at age 30 – and plunged straight into menopause with a vengeance. Then I was diagnosed with Thyroid issues and had my gall bladder removed.
I can remember feeling so enraged that I had these health issues, after all I was the health conscious one - the one who ate healthily, took exercise, and was careful with our family consumption of anything processed. The problem was, as usual I stuffed my feelings away, I took on more and more responsibilities, and then my mum was diagnosed with a life limiting illness. It is fair to say that during this time, and for the first time in my life, I got to know a mum that I didn’t know and couldn’t recognise - we got to know each other in a very different way, and for that I am very grateful.
After my mum passed away, I got a part time role as a receptionist in our doctor’s surgery – he knew all about our family and the challenges that we had faced, and within 6 months he suggested that I consider studying for a business degree in strategic management. When I started the degree, I couldn’t put 500 words together for an essay that I was asked to submit about what was different about me, and why I deserved a place on this course. I am not sure to this day what it was that made me go for this - I was the one who would go for an interview and sit in the car paralysed with anxiety. But something must have lit a torch in me, as I went on to do a post graduate diploma in strategic management and then went into practice management for GP’s.
By this time I was in my early forties, life changed exponentially for us and for me – but something in me felt I didn’t deserve to be where I was, I most definitely didn’t feel good enough. I kept on striving and learning, studying now for a psychology counselling degree as well as working full time, looking after my in-laws, four teenage boys, a large house and garden, and with a grandmother who was very reliant on me.
How did I do all of this? – your guess is as good as mine! When I look back on it now, it feels as if I disassociated from my body and my mind just took over – I hardly slept or ate well, exercise went out of the window, and self-care – what was that?
I burnt the candle at both ends, working 7:00am – 7:00pm, studying evenings and weekends, never having a break, even taking study on holiday with me. I had chronic headaches, aches and pains, I was an insomniac, and I lost so much weight that everyone was worried about me and thought I had an eating disorder. If anyone said anything to me about this, I worked all the harder so that I wasn’t found wanting.
Of course, this life was unsustainable, and one day at work I just sat in my chair with tears running down my face - I had lost the ability to speak, move or ask for help. I am forever grateful for a lovely person who got me home that day, and home is where I lay for the next couple of years. Without the ability to read, work, eat or sleep, I was in a heap of pain. Countless GP appointments and Consultant appointments didn’t find anything, until finally it was suggested that I had Chronic Fatigue and Fibromyalgia.
Things I dragged around with me
I have since come to learn that along with the punishing schedule I had worked myself into, it was the weight of the emotional baggage that I was carrying with me every day that caused me to finally shut down completely. Thoughts like ‘I wasn’t good enough’, ‘I didn’t deserve nice things or people in my life’, ‘I had to keep on striving in case people found out that I was a fraud, a fake’ were fuelling this unsustainable drive to take care of everything but myself. I overcommitted to people with my time, resources, and finances, and although I had sort of found a way through the recovery minefield I was still dragging a lot of adverse childhood experiences, perceived responsibilities from childhood to run a smooth household (so that people couldn’t criticise my role as a mother/wife) and old beliefs that weren’t mine. Worst of all, I was also seeing that I was continuing the cycle and handing this baggage to the next generation.
I still continued to care and overcommit, and often became overwhelmed, which then brought up all my symptoms. It wasn’t until I found boundaries and put my health at the heart of any decisions that I made, that things finally started to turn around and fall into place. This is something that I have to be aware of every single day; asking myself ‘what do I want, what do I need’ and guarding myself against jumping headfirst into asking people what I can do to help.
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I then was triggered by a huge life event, the diagnosis for my father of Motor Neurone Disease, and his eventual death some 10 months later. It was such an horrific time, as every day I saw small part of my father disappear.
After his death my symptoms became quite severe again and I had to give up work.
I was still researching and pursuing many forms of recovery, and then found SIRPA - an online recovery programme that looks at the work of Dr Sarno and his mind body connection, and how over time all the stressors manifest as medically unexplained symptoms in later life. I trained as a SIRPA practitioner and found the last missing pieces to my wellness puzzle - it is all about me after all, and I should not feel shame or selfishness in giving priority to my own needs and wellbeing.
Armed with this newfound knowledge and passion for recovery, I created an online programme of all the techniques that worked for me and started using this with my clients – and we have had some amazing results.
I had a couple of years of working on building up my online clinic and was having a great life, doing all the things I love, including visiting friends back in New Zealand. After returning from a wonderful visit, I went for (what I thought was) a routine mammogram, where having previously had no signs or symptoms of anything out of the ordinary, I was hit with unexpected, devastating news.
4 May 2023 – Diagnosis Cancer
After many years of successful recovery from my Chronic Fatigue and Fibromyalgia, I got the news that my mammogram had early signs of cancer. It was the day before my sons 40th birthday and we had a big party organised. I walked out of the clinic absolutely stunned, I remember sobbing in the car park and saying to my husband “I don’t know how to cope with this”. No one will hug me in the same way for fear of hurting me, or talk to me about their problems, they will keep secrets because they don’t want to worry me, so many thoughts about family, friends and life all ran through my head. And, also about the diagnosis – I knew deep within my soul that I would never be the same again
My breast biopsy showed a large cluster of calcifications that were significant enough to warrant a full mastectomy, but the surgeons were hopeful that I could have a reconstruction at the same time. I was then referred to the surgical team at our local hospital’s oncology team and the Plastic surgeons at another hospital, my mind was racing with so many questions and fears:
How will we manage financially if I can’t work? How can I see clients if my mind is not 100% able to compartmentalise what is happening? What will I be able to do? Will it stop me doing the things I love like going to New Zealand? How will it affect me every day when I see myself in the mirror? How will it affect my relationship with my husband? I cried at the thought of what I would lose – how it will affect my relationships, how it will affect me, all sense of optimism was gone.
I was considered to be one of the lucky ones, with no follow up treatment required, but what I and my family hadn’t appreciated or realised is that to some degree this diagnosis is still life limiting. Having left me with nerve pain and needing further surgery, all my personal plans and goals were on hold - including (but not limited to) my business and financial goals.
As one of the ‘lucky ones’ this diagnosis took away so much, and having the mindset that these things are sent for a reason, it has taken a lot of internal searching to try and find out what this might be. What I used to do is push through, find options, set myself goals and intentions - not necessarily big goals, but small ones every day that will take me to a bigger version of what I think of as achievement. But that wasn’t happening, and it left me feeling rudderless, bereft, less than.
The things that have driven me in the past were the expectations I thought other people had of me and the expectations I had of myself. I often compromised my own feelings and needs to accommodate others, I had to decide that I couldn’t afford these to colour my own needs and wants, they longer served me and caused me internal stress, I am sure that these stresses contributed to my cancer. My world shrank as it accommodated living with pain once again and being unable to do the most mundane daily tasks such as laundry and cleaning as my body healed from the procedure(s). Although my condition is not life limiting in the true sense of the word, it has been life limiting for me in my world as I know it. I felt so incredibly tired as I struggled to find the energy to put my life back together once again.
This has triggered so much of what I repressed about the emotional journey from when I had CFS and Fibromyalgia, which I am now having to sit with and work through. I am incredibly blessed to be surrounded by people who love and support me, who want the best for me, and I know that if and when I reach out that someone is there with just the right words of encouragement to help pull me through some of those darker thoughts.
Figuring out my next steps – September 2023
The intentions that I have set for myself going forward are:
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To put some fun into my life, gently live in the moment and appreciate what I have now at this moment in time.
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Fill my life with adventures, nothing too earth shattering but something that would be meaningful for me. I’ve always fancied house sitting and hiring a camper van to go off exploring.
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Pursue things that interest me, like writing, or having the energy to cook. This will require me to change the flow of my day.
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Live my life with passion and curiosity, a switch to enjoying the journey instead of setting goals for myself. One thing I have discovered through this part of my journey is that all the goals you set for your business and finances can come completely undone in a heartbeat. Also, that the world continues to turn, even if you think your part of it has ended.
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Nurture the relationship with myself, stop valuing things and achievements over people and relationships. I want to reassess the expectations of self and how I will compromise what my needs are, in order to meet how I perceive other people’s expectations of me.
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Ask for help when I need it – this will require me to be open, honest, and vulnerable not only with myself, but with others. In the past not being seen as professional has caused me to overcommit, which has created overwhelm and culminated in stress and an eventual breakdown.
Although I am still struggling with nerve pain and I know I have more operations on the horizon, I absolutely can’t do any of this without support, and I have the most amazing people in my life who I know will help me to succeed.
This poem from Rumi speaks to something deep inside of me and has helped me through some of the challenges that I have had to work through, I hope it also helps you too.
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“When I run after what I think I want,
my days are a furnace of stress and anxiety.
If I sit in my own place of patience,
what I need flows to me, and without pain.
From this I understand that
what I want also wants me,
is looking for me and attracting me.
There is a great secret here
For anyone who can grasp it…”
What has worked for me – and can for you too
The first thing I do every day when I wake up is to check in with myself. I turn inwards instead of going on that outward journey of what do I need to do today, what are my commitments, or checking my calendar and emails. I can’t emphasise enough that we do have all the answers inside of us. Because of our busy lives we have lost the ability to connect, to check in with ourselves and access the solutions.
As soon as I put one hand on my heart and one on my belly I feel my presence, and by breathing into this heart space and saying to myself ‘I am’, it centres me. It stops that relentless voice in my head that tells me all the things that I am not and instead reminds me of who I am – someone who tries her best, is kind, compassionate and is always willing to listen and help where she can. I know I am not everyone’s cup of tea, and I am alright with that - now.
In this journey we look at what is unique to you (just as I did on my journey to wellbeing) - this may include Adverse Childhood Experiences, (ACE’s) self-induced pressures, environmental triggers, or beliefs that we bring from childhood that were handed down to us. We then use these to identify the symptoms that are stress induced. These may include past traumas, bullying, over commitment, daily stressors, pain and the brain, how changing our beliefs and behaviours changes our neural pathways, and our pace of life.
We then go on to look at the different areas of life and use a Wellbeing Wheel to identify where in life that perhaps we might need some additional support. I use this idea every couple of months to keep me on track using the following headings:
How to Assess Your Wellbeing using the Wellbeing Wheel
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Diet & Nutrition – how good am I at looking after myself, - I know I can when I am not over committed, but I can easily slip and go for the easy options when feeling overwhelmed.
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Self-Care – this is a big one for me, we are not talking about bubble baths and spa treatments here, although they are great. We are considering our boundaries, looking at our commitments, finding time in the day for those pockets of peace that we need.
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Lifestyle Balance – this particular area is around work, play, family life and Self-Care.
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Environment – you may not think that this has an impact, but if your mind is cluttered then you generally find that you home is cluttered too. Work/life balance is included in this too
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Physical Activity/Movement – this can boost mood and your sense of wellbeing. If I don’t get out for my daily walk it is usually because I have over committed, it is my time for my brain to reflect and I always come back feeling less like the world is on my shoulders
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Relationship(s) – with your family/friends/significant other and most importantly he relationship with yourself
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Emotional Awareness – how do you raise it? What do you do for Self-Care?
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Life Purpose – look at the factors that we may use to define our ‘life purpose’ – life purpose for me is doing what you love, and loving what you do.
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Making time to Become the Observer of your own life
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Setting intentions for New Beginnings
This is the start of peeling away the layers of our own onion:
Recreated with the kind permission of Charlotte Ball
You might then decide to take a deeper dive with a trained practitioner to consider how Adverse Childhood Experiences impacted your life, and how your Inner Child reacted to the Trauma(s). Understanding and finding out how you can identify and reframe your beliefs from childhood can make such a difference to how you perceive yourself, it is like a cloak has lifted to reveal the true you. Living life from this space is incredibly freeing.
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Knowing your values is also important, it colours our decision-making process. We can feel viscerally if something is right or wrong for us, and if we can identify and readdress our fears, we can see how the internal family system has been working to protect us. If we acknowledge ourselves in the space that we are in and change our beliefs, we can start to re-engage with the beautiful person that is you.
It takes courage and commitment, which whether you believe it or not, you will already have. It might be hiding but it is inside you, we just want to encourage it to come out from its hiding place and grow into a being that is confident in their own worth.
So that is a little of my story, which has been all about re-engaging with myself, and asking the question ‘who am I?’ - I would urge you to always, always ask yourself that question.
If you would like to hear more about my journey, the work that I do, and my thoughts behind it all, please check out this episode of the ‘Crushing Doubt’ podcast, where I discuss all of this in my interview with Dr. Dan Ratner:
I also recount my journey to recovery in this interview with Georgie Oldfield from SIRPA: