Florence was named after her place of birth, Florence, Italy. Her family returned to England and had a new house built in Lea, Derbyshire called Lea Hurst. They lived there until 1823, the family moved on to Hampshire in 1825, however Lea Hurst served as a summer residence for the rest of Florence’s life. (2) Each year Florence would spend 3 months at Lea Hurst and she developed numerous connections in the region, many of which are still celebrated today. (3)

Florence found her calling to become a nurse. Pursuing a career in nursing was looked down upon by society at that time, especially for someone with an affluent background. (4) After much opposition, and against her families wishes Florence announced her decision to enter the field in 1844. She trained at Kaiserwerth on the Rhine in 1851 and also in Paris. In 1853 she became a superintendent of a hospital in London for invalid women. (5)

In 1954, Florence took a team of 38 nurses to care for the British soldiers fighting the Crimean War. Florence found appalling conditions and a high death rate of soldiers. She fought hard and revolutionised the nursing of soldiers. She worked endlessly to care for the soldiers themselves, making her rounds during the night after the medical officers had retired. She thus gained the name of “the Lady with the Lamp,” (6).

Florence didn’t just have the lamp, she was also ‘The lady who conducted pioneering and brave work as a statistician during a time when women were a rare presence in such fields. Florence Nightingale, one of the most prominent statisticians in history, used her passion for statistics to save the lives of soldiers during the Crimean war, and do ground-breaking work in data visualization that continues to be influential to this day.’ (7)

Queen Victoria sent Florence a specially made brooch to thank her for her accomplishments. However, Guys and St Thomas report that ‘While working at the British base hospital in Constantinople, she contracted a bacterial infection known as “Crimean fever”. Florence never fully recovered from this infection.’ (8) She continued to care for her patients and In 2015, Raymond,S writing for Guardian Liberty Voice stated that ‘One of the symptoms of the disorder is sleeplessness. She would use that time to walk the halls with a lamp and continue to care for the patients even through the night.’ (9)

Barbara Keddy, BSc.N., M.A., Ph.D., Professor Emerita, School of Nursing, Dalhousie University, Halifax, Nova Scotia, Canada. A fellow Fibromite and CFS/ME sufferer was also keen to look into why Florence Nightingale is linked with Fibromyalgia and discusses that ‘A person interested in Ms. Nightingale’s life would read about how after she returned from the war in the Crimea where she was faced with the deplorable conditions, she took to her bed, often refusing visitors, with ailments that were invisible and a condition that was without a name.’ (10)

On many websites it seems that the link between Florence Nightingale and Fibromyalgia is just speculation. However, Kevin White, MD, Phd justifies Florence’s ‘meticulous note-taking’. In ‘her very own diary, in which she documented the chronic widespread pain, fatigue and mental cloudiness she suffered over the last 40 or so years of her life.’ (11) White also mention’s having a dislike to the phrase Fibromyalgia and now personally calls it ‘Nightingale’s Disease.’

Despite her constant pain and fatigue, she did not shirk responsibilities and needed to let the world know the value of the profession of nursing, this became her ‘major achievement that raised nursing to the level of a respectable profession for women’.(12)

At the age of 38, things got a little too much and she became bedridden and she was often confined to her bed in the latter half of her life. In 1859, Florence still not to be defeated, wrote 2 books called Notes on Nursing and Notes on Hospital.

Guys and Thomas, proudly list Florence’s further achievements: In 1860, she established the first professional nursing school in the world at St Thomas’ Hospital. She founded London’s Nightingale School of Nursing, which raised the reputation of nursing as a profession.

In the 1870s, Florence worked with the government to push for legislation to significantly improve sanitation. Florence inspired Red Cross founder Henry Dunant. She went on to directly influence the setting up of the British Red Cross in 1870.

in 1883, Nightingale was awarded the first Royal Red Cross by Queen Victoria. She was the first woman inducted into the Order of Merit in 1907.

On August 13th 1910 Florence Nightingale died peacefully in her bed aged 90

“There is no part of my life, upon which I can look back without pain”, Florence Nightingale

References made in this blog can be found below:

1. https://www.meassociation.org.uk/2012/05/florence-nightingale-still-comforting-the-sick-white-house-chronicle-13-may-2012/
2. http://www.derbyshireuk.net/nightingale.html
3. http://www.florencenightingale.org/florence-nightingale-in-derbyshire/nightingales-connections-to-derbyshire.aspx
4. https://www.thefamouspeople.com/profiles/florence-nightingale-1401.php
5. http://www.derbyshireuk.net/nightingale.html
6. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2920984/
7. https://thisisstatistics.org/florence-nightingale-the-lady-with-the-data/
8. https://guardianlv.com/2015/05/fibromyalgia-did-not-keep-florence-knightingale-from-her-duty/
9. https://www.guysandstthomas.nhs.uk/about-us/our-history/florence-nightingale.aspx#na
10. http://womenandfibromyalgia.com/2008/05/12/fibromyalgia-and-florence-nightingale/
11. https://thefibrofog.blogspot.com/2014/03/the-ravages-of-nightingales-disease.html
12. http://www.bl.uk/learning/timeline/item106505.html

Hello and welcome to my first ever blog.

I am Cheryl, Mum, Dad and carer to my two, not so kid like kids, they are George and Bridgitte 21 and 18 years respectively.

My life has always been stressful. I have been a single mum for the past 14 years. Being a single mum is hard enough, but being a single mum to someone with Tourette’s is on another level. That’s George, for the best part of 10 years he had rages like a two-year old’s tantrums, but they go one for hours and are exhausting to both he and I. Luckily his Tourette’s calmed when he hit puberty and he is just George with a few motor tics. Some of you may have seen him photobomb a zoom session, he’s ace, if a little unpredictable! 🙁

Then there’s Bridgitte, Bri from now on, the most independent baby toddler infant you could wish for. She would spend hours just sat playing with toys, albeit the majority of them belonging to her brother. A super intelligent child who won best all rounder medal at her primary school leavers assembly. Excelled when she moved into senior school with headteacher award nominations and teachers asking her to pick ‘their subjects’ when it came to choosing her options. She’s musical, plays clarinet and saxophone.

Then suddenly one day when she was 14, complained of pain in her side. It was a summers day and she was wearing a crop top and shorts, she didn’t look right, so I took her to get checked. They thought she strained a muscle and that she’d be fine in a week or so. What we didn’t know was that strained muscle, was a muscle going into spasm that would never release. It pulled her spine into a scoliosis, but not one that anyone had seen before! It’s not massive but causes lots of pain and she has mobility issues because of this.

At the time, I had my dream job, it wasn’t much but to me it was special. I worked on the beautiful campus that is Trent College in Long Eaton. I fed the ravenous 6th formers when they had a break from their studies. They were mischievous but fun to be around. It was a job I could see myself retiring in, but with countless medical appointments and school being unable to cope with Bridgitte’s pain, I had to give up that job! My job, the job that made me be me, have a friendship circle, have my own earned finances, all gone because school couldn’t cope!

So, for 18 months Bri was homeschooled with me chaperoning and then going to which and whatever appointments happened. Many happened several times a week. I was lost, I had lost my identity, my mental health and my ‘so called’ work friends. Everyone fell by the way side and I was no more than a carer. A carer who had to advocate for my daughter at every appointment, with every specialist and we’ve gone round and round and then I stopped! In all of this, I had forgotten to care for the carer and I was getting more and more poorly until I stopped! I took a break from all the appointments and just concentrated on getting better. Bri had turned 16 and even tho She was only getting 5 hours of tutoring a week, she passed all 7 GCSEs that she took, 5 of them with the highest grade she was put in for. I said at the beginning she was Bright! She could go to 6th form.

With less hours she could manage, but it meant taxi-ing her to school in the morning, home an hour after back again, in the afternoon and to whatever appointments she had as well. Something had to give and again that something was me!

Bri was also falling behind in her subjects and her attendance was horrendous, as other health issues popped their heads up and mine were just kept at simmering point. We had a discussion and she dropped a subject at 6th form. It was the best thing for both of us. I had one or two hours a week where she could be left and I wanted to make them count.

I knew that Fibro Active were running tai chi sessions down at Petersham Hall, and I wanted to do something that would help me relax but also strengthen my body because all I was doing was sitting, either in a car, in a hospital chair or at home trapped.

I’d had my own muscular skeletal issues for 30 odd years, with 20 years paying osteopaths and acupuncturists out of my earning but, now they were gone. I’d had spinal surgery in 2013, which was a complete success but they didn’t provide me with physio afterwards, which left the wrong muscles doing the wrong jobs. I had tendons ceasing up at the sight of a repetitive task. Everything was going wrong. I saw physio after physio and the exercises to strengthen one, would cause an issue with another, until I met my last consultant physio. They explained the last 30 years of my life in two sentences; your muscles have increased tone and are never at rest.

It was like a lightbulb had been turned on, that’s why I had chronic fatigue. He recommended you’ve guessed it, tai chi. So, I arranged to start the new Yang style course that was starting only a couple of weeks later. In the meantime, I’d asked my doctor to refer me to rheumatology on the advice of the physio.

The day of the first session of tai chi came around, and I meekly made my way into the hall and sat by myself. I wasn’t used to doing people! People scared me, but I stayed and we did some warming up, and some qigong and learned how to walk in a way that’s now very familiar. Week 2 came about and I learned a bit more, and a bit more week by week, I couldn’t get it!! I was so angry and frustrated with myself because my elderly mum knows two forms all the way through, and I was likening myself to her. I was beyond frustrated, but I kept with it after Julie’s encouraging words.

In March, I had my rheumatology appointment, she went through my physio’s findings and asked for a detailed history and found a whole bunch of other things. I’d thought about these before, but filed away as age or women’s or whatever. She ordered some bloods and did some feeling around my legs and came out with ‘I think you’ve got fibromyalgia darling’. I’d thought so too for the past 2 years, but the words coming out of her mouth were like daggers to my heart.

It’s strange when you believe something one minute, then want to disbelieve it as soon as you hear it said. Blood results were in, nothing shown, nothing ever was! Then it plopped on my doormat on March 9th, the letter. The diagnosis in writing. I was gutted! For the next few weeks, I did everything I could to prove I hadn’t got it, I was in complete denial.

Then lockdown happened and tai chi was moved to this video platform that no one had ever heard of before. Julie and Jane had masterfully arranged a timetable of video tai chi classes and because we couldn’t go anywhere, they did more sessions a week. I was getting better at it and feeling better too. The usual Tuesday morning Fibro Active sessions that I struggled to get to, were in my living room, and at the other end were a bunch of supportive ladies who understood how I was feeling, because they’d probably all felt that too. I suddenly felt like I belonged and people understood, all the injuries I got all the fatigue and downright exhaustion – they understood, and being able to open up about my feelings made me understand too.

Tai chi has helped me find a calmer mind, a space to be free from my worries and duties as for Fibro Active, I’ve not been here long but I know it’s where I belong.

A deeper level of Acceptance

There are so many rules, issues and circumstances that we all come across in life. Some are easy to follow, some are instilled in us as the norm, and some are very, very difficult to understand, let alone learn to accept. We can find ourselves in turmoil with dismissive views in overwhelming circumstances, under the darkness of doom and gloom. The light of happiness soon fades and the tunnel seems endless.

Waiting for Happiness

Happiness is something we all strive for. However, many of us fail to see that happiness is a journey, not a destination. It is instilled in society from when we are old enough to understand, that we will live happy ever after. Fairy tales and films give us unrealistic expectations of finding our Prince Charming or Princess Bride, and that if we work hard and build a life by getting a good level of education, buying a car and a house, getting married, having children and grandchildren, we will find that happiness. But, deep down, the prolonged stress of maintaining these efforts to make your family proud, and also keeping up with the Jones’s, continuously jumping life’s hurdles and possibly overcoming early traumas, can take its toll. If we ever do find happiness this way, it may be too late to enjoy it as time has crept up and life is too short.

Learning the stages of life

Life itself is an adventure of exploring, stretching the boundaries and learning. If I knew back then what I know now, I would not have learned the lessons I needed to, in order to get me to where I am today. I’ve got a few years under my belt where I can look back at what I have done with the highs and lows and I find myself cringing at the mistakes which became lessons. I remember being about 10 years old and admiring someone in their early 30’s and couldn’t wait to be that age because I thought they were so worldly but when I reached that age, my life was in turmoil. I can quite clearly departmentalise the stages beginning with childhood and learning, teenage life and rebelling, in my 20’s parties and adventures, 30’s settling down and 40’s accepting the skin I am in. It certainly wasn’t that straightforward by any means and I can’t speculate about the 50’s because I’m not quite there yet! I don’t know what that will entail but what I hope is that I have learned from my mistakes and will make better decisions in the future.

As a child and a teenager, you are influenced by your parents and extended family, your teachers and youth leaders who are, hopefully, positive role models who will pass on the skills and knowledge to get you through the basics. You begin making your own choices, no matter whether they are right or wrong, and you either reap the rewards or learn a lesson. So, what happens when life hits you a curve ball that you weren’t expecting?

Adapting to the turmoil

As a person with chronic illness from about the age of 13/14 (even though I didn’t know I had it then), I could not help comparing myself to others. I felt different, I found it hard to fit in; I was constantly bullied and lived in fear. I was suddenly unable to retain information and this had a massive impact on my education. I am just grateful that there was no social media in those days, so the bullying stopped at the door! From then on, I felt inferior and embarrassed about my job status, my body, and my limitations but I also adapted to the environment and somehow scraped through or changed direction. I knew I was capable of doing things but why couldn’t I do them? This had a knock-on effect with long term stress in relationships and employment and I found myself increasingly isolated.

I have spent more than 3 decades in turmoil, seemingly, always taking the wrong path, making the wrong choices. Not knowing what I was looking for but with a strong need to be accepted and loved unconditionally. Then suddenly, I’m nearly 50, it’s just me and the dog and a list of chronic illnesses. I think when some people hit their forties, they can have a midlife crisis or those that don’t may explore a bit deeper and find themselves, becoming the person they are meant to be.

Debunking the midlife crisis

You could say I had a bit of a midlife crisis when I dyed my hair shocking pink but this had already become trendy so we can debunk that. I have, however, been on a journey to dig a bit deeper about accepting myself and my circumstances.
It has helped me by running a support group, having researched a lot of areas for the programme. It allowed me to understand what was happening to me and to put the pieces of the jigsaw together at a level where I was able to look at it to help others, so that I don’t allow it to consume me.

Reasons to stay in denial

I learned that our bodies are under prolonged stress 24/7 not just with everyday life but at a cellular level and this is not a good place to be in as our bodies will just continue to flare. The problem is that for many, life cannot just stop because we are ill. We have children, family members to care for, jobs, mortgages, rent to pay, finance on the car, debt from a wedding or holiday or Christmas is coming.

Moreover, our GP’s prescribe us often ineffective drugs without us knowing our options and giving us little to no information to help manage our illness; without this vital support we are often on a spiral of long term stress and flares, leading to regular periods of sickness, time off work and undue stress on our families and friends, leading to a downward spiral of isolation. These circumstances can prevent us from accepting and learning to manage the illness because we don’t want to fail, or not provide for our loved ones, or get into debt, or be repossessed. If we got a diagnosis, we would have to declare it to our employers to protect us under employment law. If we do, would we be believed or would our managers make our lives harder for us, putting us through more stress as we are pushed to capability reviews. If we don’t declare we could lose our job anyway, if and when our performance reduces. The thought of applying for benefits is daunting and stressful and the assessment process holds your whole being to ransom, not knowing if we will get it and then when we have got it, it is only a matter of time before we get another brown envelope to be re-assessed, even though there is no cure and there is very little chance of improvement. So, we keep going and fighting this illness is the only way forward.

However, flares don’t go away just because you are ignoring them! They will get bigger and more prolonged, until you don’t just hit the wall but crash at 100 miles per hour into the back of a bus and there’s a hell of a long road back when you hit that one.

In hindsight

For me, I only wish I had been diagnosed earlier so I could have tried to take the right path instead of battling through until I ended up with 7 years off work. The problem was, after returning to work still undiagnosed, I lasted 6 more years before it all ended again. It impacted on every aspect of my life and yes! I did feel bitter about it. I felt short-changed as I spent 3 years retraining before returning to work. My husband left, my dad passed away, the landlord put the house up for sale and I suddenly went from a married professional to claiming benefits and needing a guarantor, all in the space of 3 months. I couldn’t get much lower! My friend Debbie suggested I spoke to a counsellor because she thought I was depressed and that’s when I went on my first journey of acceptance and loss. 

They say that the bad stuff clears the way to your true path. We don’t know how long we will be here for, so we need to make the best of it because I, for one, do not want to be trapped in this stress-pain-fatigue cycle forever!

Positive lifestyle changes

Our body is our temple and it is sending us messages that it needs some maintenance to keep it in good condition.

A good look at our lifestyles will see if there are any changes we can make, no matter how big or small, to help take the stress from our bodies, even down to our energy cells, as they are under prolonged stress too.

Through researching about the illness, we have learned to identify our baseline limitations and striving to keep within them will give us a more functional and less painful existence. We have learned that we need to keep moving in order to keep our muscles healthy and reduce pain; we have learned that we are what we eat and if we eat sugar and processed foods that will increase the pain and inflammation in our bodies and reduce the functionality of our body and brain. There are overlapping symptoms and conditions such as Multiple Chemical Sensitivity that is wreaking havoc with our nervous system, causing bizarre allergies and reactions. Reducing the amount of chemicals we induce and absorb into our bodies by using natural products will help keep reactions at bay.

Improving our mental health

These changes will also improve our mental health by sending more serotonin to the brain from the gut and, hopefully, increasing our mood and cognitive functions. With anxiety and depression being overlapping symptoms of the syndrome, it is not uncommon for many sufferers to be affected by having overactive thoughts, not wanting to move in case it causes more pain and being confined at home in fear of becoming ill.

It is no wonder that sufferers are consumed by the long-term effects of the illnesses and find it too difficult even to take the first steps to acceptance and management of the illness. For those in remote areas or who have little support, the lack of long-term guidance and support can be detrimental. Large, negative forums can unwittingly have an effect on isolated sufferers who may have the impression there is little hope and may find themselves in the mindset of ignoring positive posts that could offer help and advice but they have neither the strength nor the mindset to act upon it.

It’s not all about accepting the illness

I have had to learn patience when it comes to people walking through our doors. I just want them to benefit from our programme and grow in confidence. For some, they have embraced the whole concept and it has been life-changing, others come and go and for some we are still waiting for them with a warm welcome. It’s not just about accepting the illness and managing the symptoms though.

I’ve recently, realised that acceptance has many levels, it’s not just about accepting the illness or mourning the old me and reinventing the ‘new me with fibro’. It’s also about reaching the stage that enables you to find out who you are meant to be and being comfortable in your skin. Not only have I had to accept the illness and mourn my younger self which has been the foundation knowledge to help other sufferers who attend Fibro Active and readers of the website, but I have unknowingly become more confident and settled in who I am.

I have grown with the group over the last 3 years or so, not just learning from the programme but learning from other members too. I have learned what the group means to them. I have also been on my Tai Chi journey; it has helped my mobility and my inner calmness. Practising it regularly has helped me maintain my core strength and the inner calmness aids in reducing the stress at cellular level, generating the Qi around my body. Qi, being our life energy, is vital for my health and wellbeing. I can tell the difference when I haven’t practised for a while.

Finding my inner calmness

Our evening classes are based at the local Spiritualist Church. It has a wonderful atmosphere in which to practise Tai Chi and being the empathic being that I am, I have also started to explore the spiritual side of life. I have noticed this is a common journey amongst people with chronic illnesses. However, the group has maintained a neutral religious position because Fibro and CFS has no discrimination on cultures and religions. I am starting to understand why people are more fulfilled and reach that inner calmness. Also, understanding that we are all made of the same energy and substance as the universe makes it clearer to understand the positive effects of Qi.

This part of the journey has also helped me with mindfulness and meditation. Being able to still the mind helps boost energy and capacity to cope with daily influences and unplugs our beings from stressful routines, helping us to recharge without the wi-fi (unless you are streaming soothing music of course). It allows you to be in the moment and stop those overactive thoughts from allowing you to function. Together with the Tai Chi and Qigong, meditation allows the mind/body experience to come together as one. Practising it every day reinforces the inner calmness, improves your confidence and reduces those stress levels.

Embracing me

I have been unlucky in relationships. However, I have found solitude to be an advantage for managing my illness. I have learned to enjoy being alone. It has de-stressed me long term and it allows me to recharge my batteries daily without the added stress factors of others being in my home. I do things when I want to do them and I can be flexible, ensuring I prioritise my recovery time. However, being alone sometimes makes me feel lonely, especially on special occasions but on the other hand, it has made me a more confident and independent person. If things don’t get done, so be it! There is more to life than dusting and the things I can’t do have a long wait to get done. Getting things done also gives me purpose, whether I enjoy doing the tasks or not. I don’t have anyone to rely on, so I don’t get complacent about my illness.

Furthermore, I have felt a major change in my perspective of life. I have found that slowing down my life has given me a more profound connection with what is happening in the world. I don’t just enjoy nature now but have a sense of connection. I take more notice of the seasons and the colours and the beauty in the intricate patterns the flowers and leaves are made up of. I feel the energy around the trees, embracing their canopies as a protection as I walk beneath them.

I hold a higher solidarity with other women and men. As a child and young woman, I had little interest in what others were going through, due to my own fears and traumas. Not having children myself, I had little to connect me with other women who had children. However, I now feel a stronger need to be able to build the confidence of women who walk through our doors, who silently suffer from years of belief that they are worthless and stupid or have prolonged, stressful lives being carers to a loved one. Instead of judging someone who may be disruptive, I find myself treading in their shoes and looking for solutions to help them overcome their anxieties. These feelings are getting stronger and I believe I have found the life path that I am meant to be on for now.

How do I know I’m on the right path?

As I have said before, the bad stuff happens to clear the way for the good stuff. It might not be a very nice experience but it will educate us and make us stronger. Things always happen for a reason. It might be only temporary or it could be a lifetime experience. It could be positive and uplifting or it could be a life-changing disaster. Whatever form it takes, I believe it is meant to happen and it is up to us to learn the lessons and find the strength to make the changes to our lives, by learning to make the right decisions. Some people may never find the strength or understand the lessons. That’s OK, it might not be their time.

There are synchronicities throughout life that are leading us to the right path. Synchronicities are the coincidental occurrence of events.

Looking back to when my life was in turmoil, I believe that it was a message that I wasn’t on the right track. I always said anything but ‘shop work’ and what happened? My skills were organising events. So, after failing my exams and on the back of a marriage that should not have been, I joined the Scout Association where I excelled at organising events. During this time, I always knew I could do better and fifteen years later, after a string of dead-end jobs and illnesses, I found an advert in the local paper for an events course. Three years later I gained a BA Hon. Although I only had a further 6 years at work, those experiences have led me to starting and running Fibro Active. That’s not all: an unlikely former colleague helped start that group after he asked to meet for a catch-up. You never know where things might lead.

So, if you are feeling like you are on the wrong path, keep an eye out for an event or opportunity, a chance meeting, a referral, reading a book, a stranger approaching and talking to you, or an advert in the paper that really resonates with you.

And finally…..

It doesn’t matter how bad you feel in the morning, that too shall pass! Get up, get dressed and never give up. Go for a short walk in the local park, say good morning to everyone who passes, regardless of whether they reply or not, keep your head high and smile. You may be the only person who speaks to them that day. Remember, how you feel isolated at home.
Be grateful for the little things, as they will lead to bigger things. A little gratitude goes a long way towards your own spiritual wellbeing.

If you can’t do it standing, do it seated and if you can’t do it seated, visualise. You have the power inside of you.

When Endings are just the Beginning

By Susan Monk

I was diagnosed with Fibromyalgia in May 2019. After many months of investigations, and hospital appointments in various departments, I had a name and a cause. Relief lasted only seconds. The next sentence included the words “ there is no cure but we can give you tablets to help you sleep and for pain relief ”. With no knowledge of this condition that had had a devastating effect on my body, all I felt was desolation and loss.

The cause or trigger for my developing FM linked back to October 2018. I developed cellulitis from an insect bite abroad, which led to sepsis. Seconds after having yet another antibiotic administered to me intravenously, I went into anaphylactic shock and seized till my heart stopped. The consultant told me and my husband that this trauma had in all probability changed my neurological responses and that it was permanent.

I searched the internet for information but reading about FM was throwing up more confusion than answers. Also the response from others was depressing and unexpected. “ thats that problem that’s all in your head isn’t it?” or, “but you look so well”. Finally I broke down while talking with my physiotherapist. I asked her when I would get better. Her response was, that my muscles had wasted somewhat and would continue to do so to a degree, due to my organ damage. Physiotherapy would be not only painful, but counterproductive. That I needed to accept that the past body was gone and concentrate on making the best of what I had.

Clearly that wasn’t an acceptable answer to me so she suggested Tai Chi as a direction my body may cope with. I left with a leaflet and a number to contact. A few calls later I found the Tai Chi class and more importantly Fibro Active. I spoke to JB and nearly an hour later I had blurted out a million questions and emotions. After putting the phone down I sat and cried ( only the second time in months). Not only had I spoken to someone who had FM who really knew and understood, they were living with it, not fighting with it. For the first time in 8 months I had hope.

My first lesson was nerve racking but need not have been. I was made very welcome and there was no pressure at all to do anything you didn’t want to. I didn’t last past the warm up but was encouraged to sit and watch. I left feeling happier than in a long time.
I had something to aim for, to distract me and help me from moments of overwhelming despair at my prognosis.

Slowly I managed more and more and found my upper body strength improved. I’m hoping that I can now hold off any further muscle weakness for the time being. The regular links on the website are very informative and guest speakers also add to my knowledge. I no longer feel helpless, I am helped in a positive environment with others from a diverse demographic but with something that gives us common ground. A stark contrast to those early bleak months.

In conclusion, the group and Tai Chi have enabled me to accept, most of the time, what I can do each day is enough. That I’m not failing myself and others. I’ve moved on from waking up every morning in a painful strangers body, overwhelmed with the battle ahead, to a more positive expectation of what is. My self esteem was built around what I did, what I achieved and how I pushed myself. I lost that and hated myself. Group has shown me that FM is part of me. I can hate that. I dont have to be defined by it and it’s ok to be proud of smaller achievements. Such as going to group and Tai Chi when all I want to do is stay still! I have perspective now.

Don’t wake the alien!

Fibro and CFS cannot be fought in the usual sense. The more you rebel against the symptoms, determined to beat them, the more it will consume you until one day you crash! Your body is on overload and we need to relieve it of all the prolonged stress life might be throwing at us. Think of it like you have an alien inside you. The alien is the symptoms. You have to stay really calm and not wake that alien, otherwise he will punish you with a flare. You now have to be kind to yourself to keep yourself happy! It doesn’t happen overnight and there’s no quick fix. To be able to start your acceptance journey there must be a starting point, but you may not know where that starting point is yet. For me my journey started many years ago when I was 13 3/4 years old, but I didn’t know about it until I was 42. I just knew that every so often I became very ill with one thing or another and I would have to recover and build my fitness up from scratch again. 

The start of my fibro journey

I was off school for 3 to 4 weeks and you could see from my school reports there was a complete change overnight from Julie is doing really well to Julie must learn to concentrate and Julie can do better! It was like the teachers were talking about someone totally different. I found revising for exams almost impossible as I could no longer retain the information, I began to have constant pains in my knees, the Dr’s called it growing pains! I was stopped from doing all the things I loved, sports, I was team Captain and missed out on a visit by Tess Sanderson one of my idols back then because I had been taken off the school team! I had to stop riding horses and I kind of went off the rails for a year as I found myself in limbo. My grades dropped dramatically, and I didn’t make it into art school. Thereafter, there was always something wrong with me and I was beginning to be labelled a hypochondriac by close family members.

Acceptance and Loss

The counselling lead me on a journey of acceptance and loss. I found it very difficult to talk about my inner feelings, so I was set a task to make a collage / picture that depicted my past present and future. I spent weeks trying to put this together. It was a difficult journey. I found myself collecting all my achievements: certificates, ID badges, medals, photos of everything I had done in the past, but I couldn’t fit them all on the canvas and no matter how I tried to arrange them, they just didn’t look right.

Each week I would go back to the counsellor with a photo of my efforts and try to explore the block of creativity. Although I was mourning my past achievements it was like I was divorcing myself as I was still here. Eventually the ideas came to me and I just put all my achievements into storage. I had to accept that used to be me. I was now ready to explore who I currently was. I felt short changed as  I6 years previously, I retrained and completed a degree, in those short years I had achieved so much and worked so hard. Then I had to accept that I needed to work part time, I felt guilty when I finished work at lunch time, it felt like I was wagging school! I had spent the last 25 years working full time. I was the sole bread winner and I was really worried about the drop in income. How would I make ends meet?

I haven’t got any children and my ex-husband had left 3 months before. My job was on the line with, yet another capability review and the landlord had put the house up for sale. It was just me, the dog and the cat. By the time the house was sold I had gone from being a professional to DSS with pets,  I needed a guarantor just to rent another property. I think at that point if someone else had thrown a spanner in the works, I think I would have been sent over the edge.

Things always happen for a reason and all this bad stuff was clearing the path for a better future, although I didn’t realise that at the time. My future was determined by a meeting with a former colleague, Kev Hatton. He met me at Costa for a catch up and was shocked to see me propping up a walking stick and not being able to get out of my seat. The last time he had seen me I was a boxing coach!

Kev was now working for the local council in sports development. He asked if I had any support and suggested looking at starting a support group. At the time I was too poorly but after months of passing emails back and forth, I started to gel with the idea. The seed was sown. I said it wouldn’t work without the whole concept being positive. Being positive for others has given me my direction and 2 ½ years later here we are. I have been able to reinvent myself using a life time of experience and skills I thought I would never use again.