Sometimes you get warning signs - at other times, it just slams in your face.
Now I've turned my life around from the negative to the positive on many occasions and as we say 'turning poison into medicine' has almost meant that. So this is how my story goes.
I started learning violin when I was nearly 5. My father played; his uncle played; my great grandfather played, and his father too. The violin I play (when I'm not in too much pain) has been passed down that line. However, I was the one to make it my profession for 35 years. I guess you could say that I was doing paid gigs from the age of about 14 - playing for barn dances and ceilidhs in west Wales.
I can't remember all of them but there have been memorable ones for many different reasons! I've toured Europe and the USA; performed and recorded with and for some very fine musicians; organised and run my own festivals and written books on Welsh Fiddle Music too. I started teaching privately in Oxfordshire from 2007.
Q: So what on earth am I doing here?
A: Fibromyalgia- pain, fog & fatigue!
I'm not sure when it started but it was well before I was diagnosed in early 2015.
In 2008, both knees were painful and crunching. It was only when they locked on my stairs leaving me stranded for 3 hours in pain sitting halfway crying that I eventually got on the list for a bilateral arthroscopy - both knees.
I had IBS, arthritic and painful knees, shoulder strain, lower back pain, migraines, memory white outs (fog) and in 2014 a short stay in hospital with suspected viral meningitis - I'd had a migraine headache for 6-7 days and Jon was talking to me but I couldn't string a sentence together to answer back. (I had to have a lumbar puncture and that's when I claimed that I was completely Spinal Tap!)
I was no stranger to codeine and tramadol painkillers. I always had a stash in some case or bag. I needed them most days.
That was when things were starting to become obviously noticeable. In late 2014 I had a month in the States on tour in New England. That was an absolutely brilliant tour - I loved every minute of it! But when I came back, something painful developed in my wrist and I couldn't use my left hand well at all. Kind of essential as a fiddle player! I assumed I'd strained it carrying bags through the airports.
I saw my doctor. Painkillers and rest - yeah? I am still a member of the Musicians' Union and they suggested I go to BAPAM (British Association of Performing Arts Medicine) - I saw a top specialist who, with the help of my postural placing using my violin, recognised my pain as and inflamed lunate capsule within the bones of my wrist. Prescription: Six months complete rest for my wrist and many sessions of physiotherapy. I was so shocked on that journey back from London that I left my precious fiddle on the train. It was safe - someone had handed it in at Birmingham - I was lucky!
So six months of turning down gigs and a strapped up wrist - still teaching but unable to play. It was at this time that my knees started playing up again. MRI scans, steroid injections and specialist referrals. It was at one of these referrals that a specialist who was foxed by my pain but no real hard evidence as to why I was in so much, noticed my wrist strapped up. He asked me about it and if I had pain anywhere else? I told him about my back, shoulders, hips... He had diagnosed me there and then - but needed me to be referred to a Rheumatologist.
There were two paths I was offered - numb the nerves or kill the pain. Neuro pain is numbed with prescription drugs such as Pregabalin/Gabapentin or Amytryptalin. I lasted three weeks on Amatryptalin - I was a zombie and lost those three weeks from my life. The latter route involved codeine, tramadol and diazepam - to take as and when needed. Surely there had to be another way?
So cut a long story short... I researched cannabis oil and found that there was a legal product called CBD or cannabidiol. I could take it as an oil, paste or capsules and would it help? The more research I did, the braver I became and started taking it in September 2015 and started CBD users UK on facebook. That is another story - but it did introduce me to hemp tea - and with some experimentation I could use that tea to make balm.
So in March 2017 I officially retired from performing. I was tired - of the travelling and carrying gear; dealing with long and stupid hours for what felt like very little recompense - as it didn't cover the day off I had to have off following a gig to recover. It was a two year process of coming to terms with all this - in my head and I'm still sad I can't do that anymore - but I can teach... and I can make balm!
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