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RT @liberty_2019: How do you see an invisible illness? #illusionsofliberty2021 A Comedy-Drama making the invisible, visible. February 15th…

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Articles

Ian Taverner: How Fibromyalgia has impacted me

My experiences with Fibro
 
It took a very long time for me to be diagnosed with fibromyalgia. For years I was back and forth to doctors, specialists, surgeons, therapists, you name it.  Operations, invasive procedures, injections, misdiagnosis, medications galore, but nothing helped.  
 
Eventually I was diagnosed with chronic fibromyalgia, which I had never heard of.  I was still having a lot of invasive procedures, steroids, opioids, anti-depressants, anti-anxiety medication.  Did it help?  No!  Was I getting worse?  Yes!
 
The pain hitting all the time, pain in my body, brain fog, depression, anxiety.  Then the flares were hitting to crippling levels. 
 
At its worst, I never left the house, hardly left my makeshift bedroom in the lounge as I couldn’t get up the stairs. 2 sticks and a wheelchair to get around the house.
 
I had to give up work and gave up on life, totally losing the will to do anything. I would hide away, not moving for fear of pain, fear of life.
 
I was constantly letting people down, missing Christmases, birthdays, parent’s evenings, holidays, dance and gym shows, everything!
 
I’m very lucky to have such a supportive family who stuck by me. I know not everyone is as fortunate as me, and I am incredibly grateful.  I understand how hard this invisible illness is for loved ones too.
 
NHS Centre for Pain Services in Bath
 
This is a place that inspired me, untangled me, where extraordinary people do extraordinary things.
 
Even after being formally diagnosed, I was treated either for physical pain, or separately for my mental health, nothing was having any positive effect, quite the opposite.  
 
I was eventually referred to the NHS National Centre for Pain services in Bath, I had never heard of it.  After detailed assessments, I entered into a residential programme in May 2019, along with 9 other people, with various chronic pain conditions, from around the country.  It was incredibly daunting just to be in a room with 9 strangers!  The programme was intense, physically and mentally tough, emotional and reflective.  The first thing that struck me was that I was not alone.  The second was how inextricably linked physical pain and mental pain are and that they had to be looked at as one.  
 
They helped me to untangle my brain, understand my grief (from the loss of my mum and of who I was), my pain (fibro flare after flare), my head (the affect this chronic illness had on my mental health).  They helped me understand the cocktail of medication I was on, what was beneficial, and what was not, and how exercising my mind and body was not going to make me worse and really was beneficial, and most importantly, what I was capable of.
 
They got me to understand what it was I really wanted from life, to be a part of my family again, to make my wife and kids proud of me, to make myself proud of me.  The hard part was how the hell to get there!  
 
Why did I get into cooking?
 
I had a real passion for cooking before I got ill.  My late mum had been an amazing cook when I was growing up.  It was thinking of her and my own family that said to me, you need to give this a go.
 
I needed a role, a reason for being, something to be proud of something to show myself and others I was trying and worth something, I was dad, I was me!
 
When I first started, I very quickly realised that it was incredibly difficult.  Not just because my mind and body were screaming, but also I couldn’t hold a knife, let alone chop, I couldn’t lift hot pans or stand unaided for any length of time at a work top needing aides for balance and support. I had lost my ability to just naturally make dishes up, improvise, so I reverted to recipe books.  
 
The recipe books led to more problems as the lovely pictures of end dishes immediately put me off (“there is no way I can make that….”), the recipes seemed all jumbled up, I was getting through some of them, finding I didn’t have or couldn’t find a utensil I suddenly needed, and went into a tailspin, giving up.  
 
I then searched everywhere for a cookbook to help people like me, that took into account our illnesses and to help us want to cook.
 
There wasn’t one, and that was how “Cookfulness, a therapeutic approach to cooking” was borne.
 
How has cooking benefitted my condition?
 
Cooking was and is my beacon of light, my reason for being.  It’s gone from being a thing of terror, of anxiety, of so many potential disasters, to my role, my passion, my way to make mistakes and not let my illnesses control me.  It has given me back something I can largely be relied upon for, something I can genuinely say to my family “I made that!”
 
 

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