I was 20 years old when I was diagnosed with Fibromyalgia, in my last year at university and living 300 miles away from home. In many ways I was lucky; it only took around 18 months from the very first symptoms to get my diagnosis; I lived in Bath, the home of the Royal Hospital for Rheumatic Diseases and my GP referred me there after all the tests he’d done showed nothing. I didn’t have a hugely long wait for an appointment, and it took less than an hour to get my diagnosis. So yes, in that sense, I was lucky.
However, at 20 years old, having just been told I had an incurable, lifelong illness, I was given a leaflet (literally one piece of A4 paper) and told to see my GP if I wanted to look into treatment. And that was that. That’s all the information I was given about what I’d just been diagnosed with. My GP offered me amitriptyline to help with pain and sleep. I tried it. It made me black out. And that was the sum total of the help I got with it.
Over the next ten years, I got on quite well, although I was frequently exhausted from work. And then I became a teacher. Initially things were fine, but then I began having to take a day off here and there to cope with the exhaustion. From the beginning of my teaching career, I had the responsibility of leading a department and the extra work took its toll. Finally, after ten years of teaching, I had to stop. The stress was never-ending, the work was never-ending, there was never enough time in the day and I wasn’t coping. I was stressed, depressed, exhausted and had a nervous breakdown.
When I first trained as a sound therapist, I had hoped it would provide an alternative career to teaching, but soon after qualifying, I was assaulted by a student and damage to my hand meant that I couldn’t hold my instruments and so sound therapy was out of the question.
During the next six years, I had an easier time with fibromyalgia. No longer under the huge pressures of teaching, I was feeling much better physically, although my mental health took some time to recover. During this time, I had two more children.
And then in June 2014, things started getting worse again. I had a Fibro flare, which didn’t seem to end. My legs hurt, my energy disappeared overnight. I needed a walking stick for balance, but that caused pain in my arms. Fibro fog became a near permanent fixture and I couldn’t stand for more than a few minutes.
By the following year, my eldest son – then 9 years old – was acting as my carer and looking out for his younger siblings too. I went to my GP in desperation to see if treatment options had progressed since my diagnosis, when there was nothing suitable available for me. I found that there were some new options available, but things hadn’t progressed much in 20 years. I went through a series of different painkillers, each more powerful than the last, each rendering me even more incapable of functioning, but none of them doing anything for the actual pain. With other fibromyalgia symptoms being treated too, I was on 30 prescription tablets a day at one point. And still I felt no better. Before long I needed a mobility scooter for even tiny trips.
And this was life for the next couple of years, until an acquaintance, on learning I had trained as a mantra therapist, asked if I would like to teach some classes. It made me go back and look again at mantra. I started to use mantra each day and remembered how much I loved this practice. I used the long Rama mantra for healing every day. I started seeing a difference.
Around the same time, I realised that I finally had near-normal use of my injured hand again and I decided that this was a sign that I needed to go back to sound therapy. I contact BAST to ask about CPD, knowing that after so long I would need to do more training before I could think about seeing clients.
Within three weeks, I was embarking on my Practitioner Level Diploma in Sound Therapy. I bought gongs and Himalayan Bowls and unpacked the instruments from years before that I hadn’t been able to part with. I played my instruments every day. And my health began to improve.
I mean, really improve. My energy was improving, my pain was less. In a matter of weeks, I was walking. Not far, but further than I had in years. Before long, my scooter was gathering dust. My son was no longer my carer; he had his own life back.
I opened my business in August 2017, working from home but six months later I was moving into new premises, as I was now well enough to see more clients, and run group sessions. And still my health improved.
I worked on treatment protocols for various aspects of fibromyalgia, including creating a gong bath for fellow Fibromites. I worked on all aspects of my illness, combining sound, meditation, essential oils and breath work. Those 30 tablets a day I had been taking disappeared. I now take five tablets a day, and none of them are for fibromyalgia (I have several long term illnesses, but with my fibro now under control, I’m getting to grips with those too!).
So, I’ve reduced my medication by 25 tablets a day and my health is far better than it’s been in years. Not the same as it was on the medication – better. My son is free to enjoy his teenage years with his friends, and I couldn’t be happier that he no longer has to care for me.