Asda

From January 1 to March 31. Fibro Active were in the Community Green Token Scheme at Long Eaton Asda. Fabulous News!  We Won !!!!!!

A big thank you to everyone who supported us. This is a real benchmark showing that there is more awareness in the local community of the group and the condition. Jon came along from Asda to present us with a cheque for £500.

Grateful Thanks

A big thank you to Open Minds, Live Life Better Derbyshire and Rachel Bates Weleda Wellbeing Advisor and Neighbour Wardens for attending. Thanks also to Long Eaton Rugby Club for staying open and providing bacon butties and hot drinks, to Graham Buchanan of Sawley Park and Long Eaton Cricket Club and Tass at the Tennis Centre who gave their time to provide ‘challenges’ for our Treasure Hunt.

Fastest Family

For the fastest family with the most correct answers there was a bundle of experiences including: £10 Wilko gift card, a Bennets Meal voucher, a family Ice Skating pass, a family ticket for Midland Railway, Butterley and a Nottingham Forest Football shirt. This was won by Lisa Walsh and family.

The Ged Walker Dog Show 2018

On July 22nd we booked a stall at the Ged Walker Dog show to promote the Fibro 5 Challenge.  It was a beautiful day and we raised awareness of fibromyalgia and made contact with some lovely people who also had fibro.

For a large percentage of Fibromyalgia and CFS sufferers, we lead a sedentary life style to try to prevent more pain and chronic fatigue. However, we are inadvertently causing more pain and other prominent symptoms. We soon find ourselves on the pain – fatigue – stress – sleep disturbance – stiffness – fog cycle. In our minds, exercise becomes unachievable.

 Sadly, with us unable to exercise the conventional way, our muscles decondition and become tight and painful and in turn makes us become more at risk of trips and falls, especially during flares and crashes when we are at our weakest.

From when Jane Gordon our treasurer and I qualified as Tai Chi for Health instructors 3 years ago, our priorities were to reduce the risk of trips and falls. There is also an added bonus because as we improve our strength and balance, our muscles and joints become less stiff and more flexible, helping to reduce pain.

Exercise is Tabu

I have read on many forums and face book pages where sufferers are unable to exercise as it causes more pain or they are afraid to exercise as they will lose their benefits and be forced back to work. Just because we are choosing to do something about our health, it doesn’t mean we are cured or able to work, it means we respect ourselves enough to want to improve our symptoms so that we can have some quality of life, after all, we need our bodies for a few more years yet! If you keep reading comment after comment that you can’t exercise because it causes pain, you will start to believe it before you have even considered it. This adds to the ever-increasing obstacle of lack of motivation, confidence and understanding to overcome.

Yes, I agree that if you have not exercised for a long period of time and spend most of your hours per day on the sofa or in bed, there will be a degree of discomfort when you first start exercising and it will be foreign to your muscles. The key is to start at a very low intensity, practice regularly throughout the week and only increase the intensity when your body is ready. Compared to deconditioned pain, this has to be seen as positive pain as you slowly build your muscles up again. You have to have a degree of hope and determination to get through the early days.

Movement Therapy

To ensure we don’t boom and bust, we also need to look at the type of exercise that we can do without exceeding our limitations. Identifying the type of movements, balance and strength exercises that will benefit us the most without causing extreme levels of PEM, Post Exertion Malaise and increase our pain levels?

Tai Chi and Qigong, Pilates, Yoga, swimming and gentle walks are all recommended as low impact exercises that help build healthy muscles and tone and strengthen our core muscles. Tai Chi especially offers all round benefits for both mind and body, helping to reduce stress. It is challenging to start with as we have to remember the moves and find some sort of coordination. Once you have completed a course it is very rewarding.

Like anything, practice improves performance and when I first started learning tai chi, I wondered why I was putting myself through the classes because I had very low energy levels, I couldn’t stand for more than a minute, I couldn’t hold my arms up and my fatigue levels made it difficult to follow. I am so glad I put myself through the first few weeks and it helped that I had my Fibro/ Tai Chi buddy, Jane to encourage me to keep going. The classes were so beneficial, it got me out of a mobility scooter and walking again and this was a key factor in bringing tai chi into the group programme and us both becoming Tai Chi for Health instructors with an extra Falls Prevention component.

What is Otago?

Otago is a home based strength and balance retraining programme, researched and developed by a team at Otago University in New Zealand. It has been proven to decrease the risks of falls by up to a third with people aged over 65 years. It has been designed so that participants can be prescribed individual exercises to be done conveniently throughout the day anywhere in the home. While you are waiting for the kettle to boil, you can fit in a cheeky one leg stand or heel walk to the sink.

The exercises are simple leg raises and steps which make you mindful about how you walk and stand. They progress from seated, fully supported to one hand support and no support. Further progression incorporates ankle weights in the strength exercises that start at 1Kg up to 5kg and increasing repetitions.

These exercises are perfect to help gradually build the strength and balance in our fibro legs. There is no set time so we can pace ourselves throughout the day and if you chose to do them all at once, it takes just 30 minutes. The balance exercises are also a great foundation for transitioning to the tai chi.

There is an initial assessment that will give both the instructor and the participant a foundation to work from. Exercises are prescribed to do 3 days a week and on the in between days, you are encouraged to go for a walk either for 30 minutes or broken into 3 x 10 minutes, depending on your fitness and capabilities.

Although Otago is designed for the home, we will be running classes so that everyone can come together for a bit of a social outing, especially after lock down. When they have reached the top level of Otago, they will have the option to progress to the tai chi for arthritis classes.

Falls Ambassador

In between all this tai chi and Otago training, Jane and I have attended a Falls Ambassador training session. This has given us the chance to attend the Train-to-Train course, so we will be able to run falls awareness sessions for group members and students. We will also be looking at running a small falls prevention awareness event at our hall at some point in the future.
Having an all-round awareness of falls prevention is adding so much value and depth to our programme. We are able to help members and students of all ages and abilities. By tackling the potential issues early enough we will be able to help reduce the risk of trips and falls and prevent the consequences. Our aim is to build the confidence and capabilities of everyone at their own speed.

In the next article we will be looking at how our Walking to Awareness Day campaign is going. This is a virtual walking event run over 6 weeks, encouraging members to upload their steps so we can collectively reach a target and improve our walking and fitness which fits into the Otago programme and our weekly walks which will be finally happening again! Yey! If you would like to join us please visit our activity page to find out how you can join in.

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.