(Excerpt from A Tortoise Called Hope: recovery stories compiled by Carole Balfe)
This is my story about having M.E., my journey to full recovery, and some precious things I learnt along the way that changed my life for the better.
In the late autumn of 1998, I succumbed to a nasty bout of flu which turned to chronic bronchitis and put me in bed for four months, leaving me asthmatic, completely debilitated and with acute back pain. I was forty-six at the time and had to pull out of the psychotherapy training I’d started, losing a substantial amount of money in the process.
A recuperative holiday in India seemed like a good idea, but I never got there. My immune system couldn’t cope with the required vaccines and I suffered a severe reaction with a week of round-the-clock high fevers and rigors. The next six months felt like wading through heavy treacle, and, on top of the extreme fatigue and anxiety making asthma, not surprisingly, I became depressed.
Looking back now, it’s easy to see the contributing factors to the general breakdown in my health. The couple of years leading up to the onset of M.E. had been a traumatic and stressful time with the break-up of a seventeen year relationship and the hospitalisation and subsequent death of my much loved father. I was putting in extra hours as a holistic massage practitioner to pay the mortgage on my newly acquired flat as well as making the long drive to hospital to be with my ailing father every day. To make matters worse, a painful lower back misalignment was keeping me awake at night.
Instead of addressing my grief, I threw myself into my work and my counselling training. I didn’t know any other way but to keep on going and ‘push through’ even though I felt near to a collapse. In hindsight, something had to give, but back then I was too entrenched in my way of life to see this clearly. Idealistic, artistic and sensitive by nature, over the years I’m conscious I’d also become driven, impatient, over-earnest and a perfectionist always needing to give two hundred percent of myself. Unable to sit still for long, I rushed my life away, never walking when I could run, always pushing myself to be Superwoman. To keep me going during the day, I ate unhealthy sugary foods and to slow down, I’d have a drink too many at night. I’d known that something wasn’t right for some time, but all my blood tests came back clear and my doctor put it down to the demanding nature of my work.
To be honest, those first few months after being bedbound with bronchitus felt like someone had turned the lights off in my life. The ‘post viral fatigue’ diagnosed by my doctor, worryingly, didn’t shift. Everything felt like it was in slow motion as I dragged myself around London to various practitioners in the hope of getting a clearer understanding of what was happening to me. Eventually, I saw a blood microscopist who diagnosed mercury poisoning and systemic Candida. I was put on an a strict anti-Candida diet and prescribed bucket loads of supplements, probiotics and chelators alongside a course of colonic irrigation!
However, I had thirteen amalgam fillings removed in just three months; nowadays a fraction of the time recommended for the body to deal with the effects of so much mercury being released. As a result, my already compromised immune system couldn’t cope, and the Candida worsened. Able to digest very little, with leaky gut syndrome and I.B.S., I lost a lot of weight and looked jaundiced. Also, I was experiencing ‘head fog’, disorientation and dizziness, bloating, blurred vision, extreme fatigue and constantly being ‘wired but tired’. I remember feeling a strange disconnection from the world around me – like living inside a gold fish bowl with vaseline smeared around the outside. I have to admit it was a tough time and hard to see light at the end of the tunnel.
Learning to manage the symptoms
My general condition improved after a couple of intravenous high dose vitamin C injections to clear the Candida from my blood. I continued my new health regime and got on with life as best I could, still struggling with fatigue and various other symptoms. Naturally a good coper, I managed my work and life around my ‘condition’ and began to explore ways of getting support for myself.
Swimming provided a wonderful way to gently build my stamina and open my lungs. Starting with half a length and slowly increasing, in time I no longer needed my asthma inhaler. Regular acupuncture and healing sessions were a blessed relief for my system and although the benefits didn’t hold for too long they were islands of support I looked forward to, where someone cared and listened.
One of the most valuable things I learnt during this time was how to relax my body to bring it down from the Fight or Flight stress response so it could begin to re-balance itself. Daily meditation helped me to do this and soon became my ‘rock’. After just a short time of meditating I’d notice my senses re-focus, brain fog lift and I’d feel more ‘connected’. It reassured me and gave me hope to see the connection between my nervous system relaxing and the symptoms subsiding. Another important thing I learnt was how to ‘hold’ myself when things felt really bad. Meditation gave me a gentle way to do this. Thankfully, those early days of exploring the beneficial effects of meditation on the autonomic nervous system and the extraordinary power meditation has to facilitate deep, inner healing, was to form the foundation of my approach to teaching meditation today.
The part underlying stress and anxiety played
Over the next few of years, my health went up and down depending on how well I looked after myself and the levels of stress in my personal life. In hindsight, I can see now that my conditions worsened whenever there was stress going on around me. I saw several blood microscopists and complementary healthcare practitioners, the Candida would go after a course of intensive treatment but return some months later, and the underlying ‘wired but tired’ feeling of fatigue and tension running through me never left. I also had to deal with the onset of the menopause which created its own challenges. Women with M.E. can have a particularly tough time with the menopause as their adrenals are too fatigued to support their system during this big process of change. Unsurprisingly, the added stress on the body from the menopause usually compounds M.E. symptoms. I got as much support as I possibly could in the form of herbal remedies to balance my hormones.
Other symptoms had developed too, such as a hypersensitivity to sound, light, and chemicals. I panicked easily and felt overwhelmed and exhausted by most things, including interaction with other people, and even by my own thoughts. I couldn’t understand the level of fear that lay a hair’s breadth below the surface ready to catapult me into extreme anxiety for little or no reason. I didn’t know that this was due to my nervous system being so out of balance that it was sending out all the wrong signals. I confused the symptoms with what I perceived to be my own personality traits and took them to mean that I was, as I had been told so many times, “too sensitive”. At some level I think I feared my illness was all of my own making. My self-esteem and confidence hit rock bottom. I’ve come to believe that sometimes things have to get really bad before they can get better. And this was the case with me.
Re-evaluation and the road to recovery
The catalyst, that made me take hold of the reigns of my life, happened around six years into living with M.E. I was feeling angry, depressed and isolated, like many people with this much misunderstood condition, no-one close seemed to understand and I’d had to re-mortgage my house several times to pay for the expensive treatments. Feeling so low made me dig deep inside myself. I looked at my situation, needs and expectations and asked the question: what did I really want from life? I realised that over the years of being ill, I’d normalised a reduced quality of life. I now recognised that I no longer wanted to just manage my condition, and so I made a commitment to getting better, which meant making a solid commitment to my Self. Probably for the first time in my life I began to set uncompromising boundaries with others and in doing so, was able to put my health first. This was how I started developing my own good inner parent, someone who would be there for me, no matter what.
Two or three so called ‘specialists’ and a couple of blind alleys later, I was fortunate to come across The Optimum Health Clinic, who really did specialise in M.E. (founded by director Alex Howard who had recovered from M.E. himself), and the missing parts of the jigsaw puzzle began to fall into place through their holistic approach to integrate nutrition and psychology; treating the whole person rather than the symptom. I discovered that as a ‘Fast Oxidizer’ metabolic type, I burnt up energy too quickly, and I learnt how to slow my metabolism down by eating a high protein diet and keeping an eye on my blood sugar levels. Nutritional support was put in place for my adrenals, digestive system and for my sleep. I also began a course in Bowen Treatment, a gentle type of bodywork therapy that stimulates the body to realign itself, which gradually sorted the back pain thereby relieving my system of an additional stressor.
I no longer blamed everything on the Candida but began to view it as a symptom of a much wider break-down in my health. For the first time in all the years I’d been ill I was able to acknowledge that I had M.E., which in the past I hadn’t wanted to hear but now it helped to make sense of everything I’d been through. I could see my state of burn-out as the result of all the various things coming together: nature/nurture, life history/events, toxins/viruses.
Learning to trust; healing old issues
Probably the single most important thing I learnt on my road to recovery was to trust that, given the opportunity and the right amount of time, my body could repair itself. I was taught how to break stressful thinking habits so my system could get on with the business of healing itself rather than use up precious energy maintaining a state of anxiety. My sleep patterns began to return to normal with the help of re-training sleep CDs and through the daily management of my stress levels. The good news is that my health steadily improved.
I strongly believe now that an integral part of my recovery entailed healing old grief, anger and other emotional pain and developing a more loving and accepting relationship with myself. Psychology sessions, my meditation practice, and the wonderful gentle, N.L.P processes I learnt during the clinical training I embarked upon with the clinic, all made this possible. An inspiring self-help book I’d highly recommend is ‘Heart of The Mind’ Engaging Your Inner Power to Change with Neurolinguistic Programming by Steve and Connirae Andreas. During the first few months of training with the OHC, as little by little I stretched my boundaries, my safety comfort zone became less rigid. Reassuringly, recovery was a process set in irreversible motion, and as my system became more robust and learned it could do more, my confidence and well-being grew.
At the end of that first year of training in clinical N.L.P. and hypnotherapy, I moved house again, this time to downsize and pay off the mortgage. Closing down my professional practice for two and a half months, I now turned my focus and energy to decorating my new home. Weeks later, emerging from the paint and dust, rather than being exhausted I felt good! It was as if my body had made the final shunts towards recovery whilst I wasn’t looking. I’ll never forget walking my dog in the local park one day and noticing how light, steady and supple my legs felt and that the vice-like tension I’d lived with for years in my temples was no longer there. I began running and crying at the same time, tears of grief and joy came pouring out. After eight and a half years I knew I was finally better.
The gifts in the journey
That pure sense of relief and appreciation of the preciousness of life is still with me. I have to say that I don’t regret the time I was ill because my journey to recovery taught me so much. It taught me how to respect and look after myself better. Most importantly, I learned to like, love and really believe in myself. I’m now completely comfortable in my own skin and am able to see things with more compassion and perspective. I still have a tendency to be driven but nowadays it comes from that creative part of me that is excited by possibilities and projects. And of course, I’ve learnt when to sit back and take a breather. My work is full, busy and demanding, balanced by being enjoyably creative and immensely rewarding and satisfying. I run a thriving practice in North London teaching meditation, and my meditation courses for M.E. with The Optimum Health Clinic via interactive conference call reach people all over the U.K. and abroad. I feel blessed also to have fulfilled a dream by opening my own successful on-line store for relaxation, meditation and self-help CDs and my audio work has distributers globally.
Over six years into my recovery, and now sixty one, in many ways I’ve never felt younger at heart or more open in spirit. I savour life, am passionate about my work and enjoy long walks with my dog Bella along the lovely estuary near my home on the East Coast. My advice to anyone who has a chronic illness like M.E. is this: Keep faith in yourself and in life’s possibilities – no matter how hard that may feel to do sometimes. Focus on what you have, rather than what you don’t have. Take things one step at a time, and trust that recovery, much like life, is a natural process.