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.

Positive Fibro Attitude