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Jo Swims the Channel for Fibromyaliga

Jo is hoping that the weather will be good for her planned date - otherwise it will need to be postponed or worst case cancelled.  However, she already has a back-up plan in place if her Channel Swim is cancelled - heading up to Scotland to swim Loch Lomond, which is the same distance (21 miles as the crow flies)

Leighann's Story

Writing my story isn’t easy, least of all because I’m a generally a very private person, but mostly because I can only hold a pen to write for a few minutes at a time before my hand cramps. I can only sit at the computer for the same period before my wrists, neck and shoulders start to burn and cramp. This is due to my chronic incurable illness; Fibromyalgia.

My name is Leighann and I am 38 years old, I was diagnosed with Fibromyalgia in April 2010. I am married with two children, daughters of 12 and 14, we live in the North West of England.

I have always been an active and driven person, my parents brought me up to believe in hard work and that anything is possible and I very much lived by it. I always had summer and evening jobs as a teenager and started work in the family business at 16 years old. In a variety of roles in industry, I travelled the country and managed teams of people in a high profile job working long hours. Later I enjoyed working with my husband in our own family business, again hard work and long hours. This I have always thrived upon. I used to say I was always at my best under pressure. Apart from two short maternity leaves, I worked constantly until my illness made it impossible in 2009.

Aside from work I have previously enjoyed a very full social life and hobbies with everything from stock car racing, to ballroom dancing to snowboarding as well as supporting our daughters aspirations in their various clubs and social activities. A very full on life.

I cannot exactly trace when it began, there is still so much unknown about this terrible illness including the cause. I do know that there was a ‘quickening’ of symptoms in the final year or so prior to diagnosis.

Looking back, I was ill for many years prior to diagnosis and had learnt to hide my symptoms from all but those that I was very close to. This I felt I had to do as there was never any explanation for the strange and debilitating symptoms that would come out of nowhere and so, as is the way in our culture it must be ‘all in my head’? I suffered attacks of intense and disabling pain in various areas of my body as well as constant headaches, migraine, visual, taste and scent disturbances, muscle spasms, nausea, insomnia, transient muscle weakness, shaking, extreme sensitivity to temperature change, numbness and tingling. I would also experience strange episodes where I was unable to think or speak clearly and would temporarily ‘forget’ ridiculously easy things like directions to well known places or how to make a cup of tea, I found this terrifying. Equally scary was when I would lose my depth perception while driving and would feel like I was tipping over when going round a corner.  I would also be hit from nowhere with fatigue which would floor me. Though I’ve had actual whiplash from car accidents in the past, I frequently woke up with the same agonising ‘stuck’ neck and shoulder for no apparent reason.

I would visit my GP and was even rushed to Casualty several times during these ‘attacks’ with anything from suspected heart attack to suspected brain haemorrhage and hoped for a simple explanation and a quick fix but tests showed no abnormalities and eventually I would be told my symptoms were caused by depression or ‘just one of those things’. I never accepted depression as the cause – I was down because I was ill – not the other way around. Yet I would get to a dead-end. If you are told enough times by enough ‘experts’ that you have emotional problems causing ill-heath, even the most strong willed of us start to believe them. I privately started seeing a counsellor and hypnotherapist to explore if I had some hidden demons causing my problems. I didn’t.

These visits stopped abruptly when I was in too much pain to make the appointments.

These instances came closer and closer together until they started overlapping and I didn’t recover from them anymore.  I thought I was going crazy, I was falling to pieces and nobody could tell me why. I had to take more and more time off from work, upper body pain and weakness meant I couldn’t drive and I found myself taking messages and writing down completely different details to those said. Quite suddenly, my knees started to give way and my legs would cramp when I held a position (ie; sitting) for long. Walking downstairs, my knees would shake and I would stumble. I had also started to shake violently at times, neck and back pain were constant. Muscle twitches moved around my body endlessly. I remember laying sleepless in bed and rather than counting sheep, I would try to guess where the twitch would come out next, it seemed to go in a chain from one foot, up and then down the other side of my body. Shooting, stabbing, aching, burning and indescribable pains would come from nowhere and hit anywhere anytime.  Though it couldn’t get much worse, added to this, my IBS which has been present many years flared and I developed irritable bladder both of which would send me rushing to the toilet countless times a day/night. Emergency dashes to the toilet and not being able to walk quickly (if at all) don’t work well together.

My GP was certainly taking notice by this stage and I’d had various scans, referral to musculoskeletal clinic and a neurologist. I was waiting for the results of my brain scan for months and at my wits end when I started doing my own online research and came across the condition Fibromyalgia. I had never heard of it but it fit completely, there was no other one condition that did, though by then M.S. and other more sinister causes were suspected. My health was spiralling and I was increasingly disabled by this point so due to the long NHS wait for all referrals, my parents offered to pay for me to see a private rheumatologist straight away to finally get some answers and help.

By now I was living between my bed and an armchair and would rarely get dressed. I had lost myself completely to this mysterious illness and was in relentless agony. I didn’t feel like a human, never mind a woman, a mother and wife anymore. I avoided seeing or talking to anyone. My husband, children and parents were terribly worried about me and without their support and understanding; I wouldn’t have made it through those dark days.

During the examination the rheumatologist immediately diagnosed Fibromyalgia. The initial elation of learning that I had a name for my suffering, a medical explanation, I wasn’t mad and that I wouldn’t die from it was overwhelming. I felt that I had to re-write my personal history, all those times I didn’t know what was wrong finally made sense. All my bizarre, sometimes ridiculous symptoms had an explanation. I was sick and it wasn’t my fault.

This joy didn’t last unfortunately, though it doesn’t shorten your life, or deform your body, Fibromyalgia rules it completely. It isn’t curable and isn’t even treatable aside from various medications which have mixed results. I changed my GP around the time of diagnosis and though my new Doctor is understanding and sympathetic to the problems I face, there is no real help available. I take so many pills, I rattle. I take pills for the pills. A mixture of narcotic painkillers and nervous system suppressants. ‘Normal’ painkillers don’t touch the pain of Fibromyalgia because there is no real tissue damage to ‘fix’, the pain is coming from a misunderstanding between your brain and nervous system. Though again, as so much is still unknown about it, much of this explanation is theoretical. It is thought to be heavily linked with a sleep problem as Fibromyalgia sufferers never reach the restorative level of sleep that others do.

The pain is difficult to communicate in its intensity. I have read many times that with Fibromyalgia, there are 100 different types of pain and it is relentless, painkillers do not touch it, changing positions doesn’t ease it, massage aggravates it, resting can make it worse, too much movement makes it worse.

Sufferers really have to figure out for themselves what helps and what hinders. There are also so many co-existing conditions that seem to come with Fibromyalgia, which ones varies from person to person. So a treatment for one condition aggravates the other. A medication that helps me may not help another sufferer. And so the mystery continues.

Fibromyalgia has devastated my life and the lives of those close to me. It has changed every aspect of my life and at times I am not me at all.

I am still adjusting and learning and don’t call myself an expert by any means. Some days I can do some light housework, some days I can’t do anything but survive. Sometimes I walk unaided round the house for a while, sometimes I go out with one stick or two for short distances but mostly I need my wheelchair or mobility scooter. I need to rest and try to sleep halfway through the day to give myself a chance at getting to the end of the day without completely unravelling. I try to be a good wife, mum, daughter and friend I’m grateful for the love that fills my life and the kindness that has been shown to me by loved ones. Not all sufferers are so lucky.

I have been friends with Jo since our children started primary school, she also has two daughters the same ages as mine and they have been friends for years. Jo and her partner Mick are our friends through the kids but also through shared interests such as stock car racing. I have always admired Jo’s outdoorsy sense of adventure and life loving spirit, not to mention stamina. Even at my most adventurous I never had the patience or will power to complete the sort of challenges that Jo does.

Hearing Jo’s tales of outdoor swimming competitions and endurance races, I remember asking if she would ever attempt the channel a few years back and at the time she said it was way too daunting but maybe one day. It was after I got diagnosed that she decided one day wasn’t good enough. After all, if I could be struck down by an illness like this, so could anyone. All my ‘one day’ dreams were over for good and I think this thought hit Jo hard. She told me that she had decided to go for it and that it was what had happened to me that inspired her. So I suggested that she chose Fibromyalgia as her charity. She agreed instantly. Jo is an inspiration for all of us but particularly women and mothers everywhere. You don’t need to be rich and famous, you just need guts and grit to achieve truly amazing feats. Do not wait for one day.

There were so many things I wanted to do with my life, and thought I had plenty of time to do them.  I hope that by telling my story I can help Jo raise awareness of Fibromyalgia and get support and understanding for the sufferers. To give them the best chance of as fulfilling a life as possible while they cope with the devastating effects of this illness.

I have never been offered counselling or even a pain management clinic for instance. Hydrotherapy (and any moist heat) has been shown to ease symptoms in many sufferers, yet this is not offered for long term illness either. FMA (Fibromyalgia) UK website is the only support for most sufferers and we communicate with each other via the forum and attend self arranged support groups. But we really are on our own with it.

Jo's Story

Jo Norton-Barker who am I. Keen amateur swimmer, mum to 2 teenage girls , Jennie and Hannah, fiancé of Mick my ‘dirt loving’ maintenance engineer, a self employed consultant system accountant living in Barnoldswick, Lancashire. I do my best to fit a busy working life around my family, which can be stressful at times but swimming keeps me sane.  I’ve lived with my fiancé Mick for 5 years and though times have been tough in the past and it’s taken a lot of hard work I’m now happily settled with my beautiful family and home.

I have always had a weight problem and after the birth of my second daughter reached my heaviest ever being a size 28 and weighing in excess of 24 stone.  Swimming was always something I enjoyed and I started to visit the pool regularly in order to loose weight. Over a period of 7 years I gradually lost the weight and my swimming improved as a result. Getting better and stronger fuelled my passion for swimming and following the separation from my now ex-husband , I joined Warrington Dolphins Long Distance Swimming Club. As a club member I started swimming out of doors and my passion for this exhilarating, personally challenging and excellent sport was born.

I initially met Leighann through school, as her daughters Gemma and Ellie are the same ages as mine. Jennie and Gemma became friends at primary school as did Hannah and Ellie when they started. Just playground acquaintances initially we became good and firm friends about 5 years ago. I met my now fiancé Mick, who unbeknown to me was mechanic for Leigh and her soon-to-be-husband Mark who at the time were both successful V8 Hotstock stock car drivers, and Mick maintained and kept their cars on the track for them. Through evenings out and parties etc I soon became good friends with them both.

Leigh lead a busy, fun-loving full live. Uncannily like my own, with the family business, a full family life and a busy leisure life our lives seem similar in many ways, not just the fact we each had 2 daughters the same age and  were starting again with new partners, we were both working and playing hard and loving every minute of it.

My swimming was going from strength to strength and although I was never going to break any speed records, I was successfully completing in respectable times, longer and longer distances. The events I swam made summer more enjoyable with weekends away regularly through the summer with events in Dover, Devon, the Lake district, and Wales excellent for an excuse to escape for a couple of days. Swimming with fellow club members I successfully completed two channel relay swims, the first to France and back and the second just 1 way. I could not believe it! Me (the mum from Barnoldswick) was swimming in the channel, I was awestruck, following so may amazing athletes that had been there before me.  Life was getting better and better as it seemed it was for both of us.

New Year 2009 we were invited to a party at Leigh’s which unfortunately we missed as I was ill with flu, we tried to rearrange a get together on numerous occasions after this, but never managed to sort it out as Leigh was ill. As we did not live in each others pockets and kept in touch via the odd text it was not unusual with busy lives for this time to pass between meeting up. It was not until March 2010 when I was shopping for a birthday card for Mick, I bumped into Mark in the card shop, he was looking for a card for Gemma, who’s birthday is the same day as Micks. After the usual hellos and hugs etc I asked about a get together and he said Leighann was really poorly, awaiting test results and had been out of circulation since New Year.  Over the following weeks we found out that Leigh had been confirmed as suffering from Fibromyalgia, an illness I had never heard of, and having looked it up on the internet was horrified at what I was reading. I saw Leigh a week or so later at a school meeting for a camping trip Jennie and Gemma were attending, not to speak to but across the room and was physically taken aback and shocked how ill she was. The lively bubbly Leigh I knew from before was obviously in a great deal of pain, completely shattered and washed out, frail and unable to walk without the sticks she now had. This in the time frame of only a few months! 

I was unable to catch her eye, I’m presuming as she was struggling with having to start to face the world again as a Fibromyalgia sufferer. Knowing the fun loving, proud, dedicated and hard working person Leigh is I cannot imagine what she was going through. But was so pleased to see her and how bravely she was facing her illness, as I would have expected, head on!

I arranged with Mark for them to come around for a normal get together quite soon after and following my initial ‘mother hen’ questions about what was and was not comfortable for her, our evening was as normal as they always had been previously.  Over the following months we met more frequently and conversation moved to how the hell so little could be know about this illness, which can come on so quickly, affect anyone and so completely change lives in such a dramatic fashion.

Later on last year (2010) following my successful second and stronger completion of the one way Windermere swim (10.5miles) I was determined to complete the 2 way Windermere swim this year (2011) and following that had my eye on a channel solo attempt. I was not going to put if off any longer, the time was now, if I waited I might never get the chance again. We were discussing this one evening and Leigh said such an attempt should be used to help charity. I agreed and no more obvious a charity sprung to mind that Fibromyalgia UK.

Having further thought about it and trained and thought and trained and trained I finally booked my pilot for a Channel Solo next year (late July/early August 2012). And after successfully completing a 24hour swim challenge for Help for Heroes April 2011 (24 miles in 24 hours) and the 21 miles of the 2 Way Windermere Swim August 2011  I felt I had the credibility and swimming ability to now do this, as I don’t want to let anyone down.

So here we are, I’ve the challenge of my life ahead of me, and so has Leighann! If between us we can raise awareness, help understand and do something to alleviate the closed world that FM sufferers seem to live in. Pushed aside by the medical profession, as nothing can be done but living and putting up with the symptoms; living off a cocktail of drugs and forgotten by society. More needs to be done to raise awareness and help whenever possible.

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