My Journey :
Chronic Fatigue/CFS/M.E/Lyme Disease/Hashimotos Disease/ Fibromyalgia/Myalgic Encephalomyelitis
How it started
One day, thirty three years ago I woke up to a very different world.
I was twenty-three and working in Stringfellows nightclub in London, with as much energy as you would expect from any twenty-three-year-old. I had huge dreams and a passion for life.
Normally, I would jump out of bed and start my day. Up to that point I had taken my health for granted. But something was very different.
I couldn’t hear outside my head (it was as if I had water in my ears after swimming) and I had what felt like a metal clamp around my skull. My body ached and I was fatigued in a way that you couldn’t compare to normal tiredness. I couldn’t shake it off.
I went to a doctor who informed me I had a virus and gave me a course of antibiotics.
I started to suffer flu-like symptoms (that came and went), brain fog, headaches, malaise and vertigo. I always woke up feeling un-refreshed. It was as if, overnight, I had been given the body of a ninety-year-old.
I noticed another thing – where before I was fearless, I was now experiencing panic attacks and then, later on, depression.
After various trips to doctors I was finally diagnosed with Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/M.E). Back then, in the eighties, it was more commonly known as M.E or, adding insult to injury, ‘Yuppie Flu’.
I sat with a doctor, at Bart’s Hospital in London, who informed me that I needed to: look at my diet, do graded exercise, Cognitive Behavioural Therapy (CBT) and pace. He gave me a prescription for a mild form of anti- depressants to ward off panic attacks and encourage restful sleep.
What is 'M.E' I enquired
He didn’t seem to have an answer.
So many treatments
So, alongside his advice, I decided to try an alternative route.
It was the eighties, the era of the New Age movement. I was in the heart of London, on every corner there was an acupuncture clinic, a cranial doctor, a massage therapist.
The book ‘You can Heal Your Life’ by Louise Hay had just come out. I was a girl on a mission.
I juiced, fasted, repainted my West Hampstead studio flat in bright healing colours, took up regular Yoga and stocked up on Rescue Remedy and essential oils.
But no matter what I did, my body seemed to go into ‘fight or flight’ at the slightest thing. And, whereas before I had no fear, I was now scared of flying, of dying… every hill felt like a mountain. I felt like I was letting myself down. I had dreams and this illness was not going to get in my way!
I began my long journey with different therapists. I ended up trying them all and CBT became my go-to therapy for many years - but my favourite was Psychosynthesis.
Psychosynthesis works with the different parts of yourself - with sub-personalities. This work had a great effect on me then and that effect stays with me even to this day. It gave me an acute awareness of my thought processes and how acceptance and love for yourself was crucial when dealing with an illness such as M.E.
Inspired by all that I learned from Psychosynthesis, I am writing a seven-part fantasy/fairy tale book series, called ‘The Angel of the Seven Shards’.
It was here, within these sessions, I began to see that all was not well. I had a very strong ‘not good enough voice’, and she had no time for M.E.
The Not Good Enough Voice
Looking back, I can see how that part of me aggravated the very real and chronic condition of M.E.
Therapy made me see everything in a different light. I had suffered traumas when I was younger.
I was unravelling, shedding layers and old patterns, a journey that I am still on today. But throughout it all, the persistent ‘not good enough voice’ seemed to have the overall say.
I was young, but none the less I felt time was against me. They say that being in the moment has a lot to do with well-being, and of course it does…. but I was always ahead of the beat, rushing towards my destination – towards my dreams.
I was at war with time. In fact, TIME had such an effect on me that I would later cast him as man-made monster in my book series. What a true adversary he is!
I spent a fortune on healing and became more spiritually aware. But I neglected one very important thing - my body. I can see now how I dragged it around behind me regardless of how ill I felt.
Being ill wasn’t part of my picture and M.E wasn’t going to get in my way.If anyone is thinking of carrying on regardless. Please don’t do what I did!
I began to live on my adrenaline to get things done.
I was working in Stringfellows at night and on my music career during the day. I was relentlessly hard on myself. The various therapies weren’t working fast enough for me.
The Invisible Disease – Now a health crisis
I began to use over the counter medicines to get me through the fatigue and flu symptoms. I took Day Nurse to keep me awake, Night Nurse to help me sleep and pain killers for the pain in my body and head. It wasn’t long before I was relying on them to get me through each day.
I managed to mask my pain very well - if anyone thinks M.E is in the sufferer’s head they are gravely mistaken.
It's real. It’s a living nightmare. And, as we now know, it comes with a huge variety of disorders.
It's clever too. It's invisible, so others can’t see it.
It comes in waves so for a while you can seem ok then you do that bit too much and BAM – it's payback time. No cheating with M.E.
This is not to say that I couldn’t have healed myself before I damaged other parts of my body. If I had listened to the warning signs, instead of stamping them out with frustration, I am pretty sure it would have been a whole different story.
I was twenty-four when a practitioner told me to do nothing for a whole year. To rest. Reset.
How do you think that sounds to a twenty-four-year-old? I laughed myself out of their practice. Me STOP?! I could hardly do it for an hour … let alone a year.
Would that have stopped my M.E in its tracks though, I wonder?
I once saw a picture of a girl with M.E dancing around a meadow picking daisies - the picture alongside it showed her flat out in bed. That’s just how it is.
Your body is like a phone battery that never charges up properly. And when you do have any energy you spend it all on catching up with yourself. The secret is, of course, to stop before you get to that point of malaise.
Which to me, at the time, meant NO LIFE.
I did know pacing was the key, but the more I learned to live on adrenaline, the harder it was to stop.
It became like a drug. If I had taken heed of all the warning signs, knowing what I know now, maybe things might have turned out differently.
Soon the body pain and foggy brain became a constant companion.
I kept my job in Stringfellows for fifteen years, to support my music career, until I eventually got signed to a record company.
In hindsight, I don’t know how I did it all. I achieved it all through a shroud of fog and adrenaline.
My creativity and faith in God got me through. I worked with some amazing healers and went on to run woman’s empowerment and healing workshops myself.
Here is a piece of important information for those on the healing path.
Yes, you can help heal yourself with positive thoughts and affirmations. I believe these tools are crucial for well- being.
But it's not just the mind – it's in the body too.
For many years I got frustrated that, although I was doing all this spiritual work (including yoga and all the supplements), I was still ill.
It's NOT your fault. We are now living in an ever-growing toxic world!
So, what is CFS/M.E?
Over the years I have continued to ask that question with few answers. If you visit your local GP, they quite likely to take NHS blood tests, which will often come back clear. Then they label you with depression and hand you over anti-depressants and you walk away feeling like maybe you are crazy after all.
Let us not forget, one of the biggest businesses is the pharmaceutical industry who, of course, have great influence on the medical profession – a vicious circle there!
But there is hope. There are some amazing non-funded organisations out there and many are saying the same thing; It’s a combination of stress and trauma, lack of proper nutrition (because of the way food is grown these days), parasites and mould.
Together, these things have a huge impact on your immune system – it’s like a house of cards … if even one thing goes wrong it’s all interconnected and your whole system can come tumbling down.
So, is CFS/ME actually an auto immune disease?
Could CFS/ME be Lyme Disease?
Lyme Disease, is an infectious disease caused by a bacterium called Borrelia which is spread by ticks. It infects the nerves and affects the immune system.
Could a tick really have caused that much harm to my body and mind? There are many causes of CFS/M.E but, I spent a lot of time in Swedish Forests and I frequently got bitten there.
Since 1983 I have suffered from a variety of symptoms that could all be connected.
Hashimotos, Endemetriosis & Fibromyalgia
I had Endometriosis for years, which resulted in a full hysterectomy in my mid-forties.
After which I was diagnosed with an overactive thyroid. Later, my thyroid disappeared altogether resulting in Hashimoto.
I have had diagnoses of fibromyalgia, depression, anxiety attacks, migraines, cluster headaches, IBS and leaky gut to name a few. A lot of labels there.
Living with Someone with ME/CFS/Autoimmune disease
For someone that doesn’t live with CFS/M.E, or doesn’t have a member of family or close friend with the disabling disease, maybe we can excuse them for misunderstanding.
It's invisible! - That's how someone can seem ok one minute and then be too weak to stand the next.
For years I looked at friends that could go from one thing to another in awe. I could spend as long as two months recovering from one party where I got home at midnight.
The times I have heard these four comments.
· We all get tired
· You are just depressed.
· It’s all in your head.
· Maybe you don’t know how to be tired.
I often tried to explain, but they would just look at me blankly. How can this lively girl twirling in her party dress be ill?
How indeed? But now I want an answer and I’m going to find it.
I am fifty-six and as quoted by Bob Dylan - I’m sick of being sick.
I want to live my life to the full. I want to plant flowers without having to lie down afterwards. I want to get my book series out there. I want to spread the word and help others.
I have been on many protocols, some of which helped alleviate the pain, but none that cured it.
There is new information out there and much of it goes back to basics – a plant-based diet, herbs, various supplements and natural techniques that cleanse the body from parasites, antibiotics, mercury, vaccinations, mould, medication etc.
Did you know that you would have to eat forty bowls of spinach to get the equivalent nutrients in your diet today compared to one bowl of spinach fifty years ago? We aren’t getting the nutrients we need. It's not only our bodies that are tired and pumped full of toxins - it’s our soil too.
CFS/M.E and other diseases such as Alzheimer's and Parkinsons are on an all-time high.
We need to stop. Press the reset button. And really think about what we are putting into our bodies and into our minds. I think we need to revaluate our relationship with TIME too.
Follow me on my journey with Oliver Barnett at the London Clinic of Nutrition. I aim to stop medication once and for all and reclaim the energy I lost at twenty three.