Whoop Whoop !

It’s a celebration time for the Fibro Clinic South West on our 2nd Anniversary and despite the fact we’ve been closed since March it’s been a busy productive time behind the scenes and I remain optimistic that we’ll be reopening soon. 

Support and information have been ongoing throughout lockdown and people are reaching out to us from other locations.  Help and support is needed further afield and as soon as it’s possible we’ll be bringing our workshops and informative talks to Exeter, Tiverton and Honiton.

The future’s looking really exciting with plans underway for the launch of a brand-new series of bespoke workshops, aptly named  “Fibro-P.R.E.P.” a four-step check list based on prevention and managing of the dreaded flare-ups. We all know as sufferers that coping with fibromyalgia takes quite a bit of self-management and pacing, but it’s the remembering to pace ourselves that is often the problem! 

Some flare-ups are unavoidable but there’s a lot we can do to prevent the unnecessary flare and the Fibro-P.R.E.P. is a strategy-based plan which is simple and quick to implement daily.  It’s not so much about learning something new but more about increasing self-awareness of the mind-body-connection and the unlearning of unhelpful habits that may be the hidden trigger of some of the symptoms and flare-ups.

The support groups have continued online as well as the pre-booked telephone one to one’s, but so much is on hold and patiently waiting is the fully booked Fibro Tool-Kit Practitioner course, also a second course for 2021 is on the horizon along with lots of new and exciting opportunities ahead of us. 

So how on earth did all this begin is a question I’m frequently asked and it’s all down to a circumstantial flook  that happened 23 years ago. It all began when I decided to enrol on an evening Belly Dancing course but on the night it was due to start it was cancelled last minute.  The only other option available was a Certificate in Counselling Course – and me being me thought “well whatever” so I enrolled and that my dear friends was the night that literally changed my life !!!! 

This progressed to a three year Diploma in Counselling, working at the NHS, various other organizations and private practice in combination with my existing career working as a Nutritional Therapist.  I further trained for my Master Practitioner Diploma at the National Centre of Eating Disorders to specialise in weight management and obesity which I have to say was much less prevalent twenty years ago.     

I continued to work in private practice, clinics and rehabs, also training in Neuro Linguistic Programming, EFT etc.,  and new doors opened when I was invited to join an organization specializing in addictions.  Life was busy up until five years ago, then – BANG!

It started with pain in my lower back, feeling generally unwell and I could barely walk. So work was put on hold and it was back and forth to the Dr’s and finally referred for tests, scans and MRI – the same old story.  Like most of us who suffer all tests were normal but by then my anxiety had gone through the roof.

Eventually I was diagnosed with fibromyalgia and never before have I felt so lost and completely isolated! It was a shock to find that there was a total lack of support on offer, medication was prescribed and that was about it. I realised that there had to be others out there with the same diagnosis and that there had to be another way through this without having to take the awful medication which my body was rejecting.  Once I’d managed to overcome the anxiety I was suffering I was referred to the Pain Clinic and managed to pull myself together, connect with other sufferers and organize meet ups.

Gradually I was able to return to my practice part-time and with the help of mindfulness practice, breathwork, a few changes to my diet, exercise and natural remedies I began to heal and remained medication free.   

Life became more bearable until another shock came a couple of years later when out of the blue I was diagnosed with colon cancer which unknown to me had been slowly been progressing for a couple of years.  When I think back I wonder if this may or may not have coincided with my original lower back pain and sudden ill health?  Fortunately for me the diagnosis was just in time and within six weeks of receiving this devastation I was on the operating table on 2nd November 2017.

It was whilst I lay in my hospital bed wired up like a circuit board and waiting to hear the outcome of the surgery, that my sensitivities went through the roof.  When the good news finally came that I wouldn’t need further treatment I’m sure you can imagine the relief! It was the  turning point after such an emotional roller coaster!  In such a short space of time I’d been told to make plans and prepare myself for the worst outcome and now I’d been given my life back – I’d made it – my life had been saved (thanks to the most amazing Consultant and her team) and I wasn’t going to waste it! 

Following my recovery I’d got a new zest for life despite the odd fibro symptoms I began to ponder on the idea of maybe getting back into private practice and who knows maybe even open a clinic specializing in fibromyalgia. I decided there and then that with all my experience and a career stretching over twenty years as a therapist and practitioner that I was not quite ready to throw in the towel yet!  

A couple of months later I started work on the website, put my plans into action and in August 2018 the Fibro Clinic South West opened its doors for the first time.  But as with all new ventures I can tell you they don’t always go the way you expect them to go – which is just as well as it led me off in a different direction and one that I could never have planned for.  The clinic just had to evolve organically and grow on its own – where there was a whole heap of learning curves (otherwise known as errors of judgment), hard work, opportunities surprises, successes and luck! 

Some of the highlights include:

Raising the roof with laughter at the Laughter Yoga Sessions were a great success and enjoyed by all and followed with the popular Support Groups and coffee meetups.  You could see the faces light up when in a relaxed setting, given the chance to chat and to meet others who understood made such a big difference to the many ladies who just needed to be heard and feel validated.

Other highlights include facilitating the wide range of well attended workshops including the EFT (tapping), the Empowerment and Time to Shine Workshops all of which gave me the inspiration to create the Fibro Tool Kit.  

The Fibro Tool Kit was launched and over a twelve-week period two groups of wonderful ladies came together and on completion morphed into the Fibro Tool Kit-tens Support Group, becoming friends and an amazing support to each other.  This is what makes a true success story!

The Fibro Toolkit gained quite a bit of outside interest, bringing new contacts and giving me the privilege of writing various editorials and successfully raising awareness of fibromyalgia. 

Raising awareness of fibromyalgia has always been a passion of mine and introduces me to many other sufferers who never cease to amaze and inspire me, also an array of organizations and groups both local and beyond the South West. I have to say that the last talk I delivered at Tiverton Library just before lock down remains a favourite and I’m so looking forward to returning soon with more talks and workshops.

Opportunities!  Amazing opportunities arrived and the chance to take the programme further afield and the first certificated practitioner course is ready to go when safe to do so.  I’m so excited about this and confident will be a great resource to any practitioner interested in helping people with fibromyalgia.

Luck!  A huge stroke of luck came my way and I’m forever grateful that the clinic received private funding which enables the upkeep, helps to keep the workshops and treatments affordable and I can continue to raise awareness with talks and support groups.

Surprises!  One of the biggest surprises and a learning curve was finding that 45% of the clinic’s client base avoid using face book for any means of support or resource which left me in a bit of a pickle but where there’s a will there’s a way and a trial membership scheme was introduced.             

Highlight!  A highlight waiting to happen is the introduction to Qigong and Intuitive Movement both tailored to suit the fluctuating energy of fibromyalgia and individual fitness  levels of.  Unfortunately was put on hold in March due to COVID19 and thanks to the Fibro Tool Kit-ten support group I’ve been able to share some Qigong videos in preparation for what’s in store for the future!

Learning Curves!  I can think of quite a few “errors of judgment” but the biggest that sticks out was learning that fibromyalgia can so easily be exploited! I’ll say no more on this!

Up to date!  Plans are underway to reopen in Autumn and future announcements will be kept updated on the clinic’s page and online group “Breathing space” a breath of fresh air for me  – which is a good thing!  This is a group for like-minded fibromyalgia sufferers who, like me, are interested in the holistic approach to managing fibromyalgia. It’s a continuous mind-body-spirit endeavour and supporting others is essential to my wellbeing – that’s my wavelength and I’m looking forward to sharing a few waves!    

There’s been so many highlights to mention and I’m sure I’ve forgotten a few but I think that what makes the Fibro Clinic special and what shines out to me the most is the support it gives to those who have fibromyalgia and who have experienced the isolation, including myself and for that it gives me the motivation to continue into the future knowing I’m not alone.

Did I ever learn to belly dance?  Remaining hopeful and optimistic! 

Author Jok Saunders  Fibromyalgia Health Practitioner and founder of the Fibro Clinic South West

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