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How To Live A Full Life With CFS and Fibromyalgia


Having lived through the ups and downs of being diagnosed with CFS and Fibromyalgia, I finally realised that my emotional state, (along with my learned knowledge of traumas, adverse childhood experiences (ACE’s)), combined with my beliefs on perfectionism, all added up to the point in my life where I had a complete and all-encompassing breakdown some 20-odd years ago. I found a pathway out through trial and error, and this is what I wanted to share with you by writing this article.

 

I eventually found a way to accommodate all the physical symptoms and worked on my emotional minefield by creating my own ‘wellbeing pathway’, which allowed me to live a full life.

 

Below are some of what I feel contributed to the physical symptoms occurring in the first place, followed by my breakdown, and then how I have navigated a reoccurrence of Fibromyalgia and CFS symptoms when I was going through my cancer diagnosis. All of this resulted in nerve pain, muscle aches and pain, fatigue, insomnia, and anxiety. It also left me emotionally triggered again, with those feelings of not meeting other people’s expectations (let alone my own) and how compromise had once again affected my ability to be the true me.

 


Distress and Eustress

Some stress is good for us - we need some stressors for motivation. Distress is stress that negatively affects us, while eustress is stress that has a positive effect on us.

While eustress is beneficial, it can develop into distress when a situation or experience becomes too overwhelming, or when other stressors occur at the same time.

 

Eustress is what energizes us and motivates us to make a change. It gives us a positive outlook and makes us capable of overcoming obstacles and sickness.

 

Here are some of the symptoms of distress that I experienced:


  • Feeling overwhelmed, helpless, or hopeless

  • Feeling guilty without a clear cause

  • Spending a lot of time worrying

  • Trying too hard to make mine and everyone’s life perfect

  • Having difficulty thinking or remembering

  • Sleeping too much or too little

  • Having changes in appetite

  • Self-soothing with things like chocolate, alcohol, medication, and over working

 


Triggers

Triggers are sensory reminders that cause painful memories or certain symptoms to resurface. If you experienced a traumatic event, you likely remember certain sounds, smells, or sights related to that experience. Now, when you encounter these sensory reminders - known as “triggers”, you may get a feeling of anxiety, unease, or panic. Or perhaps you live with substance use disorder, where the smell of alcohol or a certain scene can trigger your symptoms. Triggers can be anything from a holiday, to a perfume scent, to a loud voice.


More information on triggers and a whole host of other mental health resources can be found at https://psychcentral.com/


But how do triggers form, and what can you do if you’re triggered?

In its simplest form, it is the life events that we experience and the reactions we have around these events that can form stressors, which lead to triggers. We can be in a crowd of people who all witness an event, and it can create a post traumatic affect for some people, while other people will go on their way without being impacted. We have discovered that it is not the event itself, but our belief around it that creates whether we are impacted.

 

If for any reason we can’t adapt when life changes - whether the changes are swift or slow, and we find we are unable to match whatever comes our way, we will imprint the perception of the experience, and this will impact how much stress we will perceive.

 

Our beliefs, past experiences, self-induced pressures, and personality types all come into play on how we cope with and manage our triggers.

 

My beliefs from childhood were that I was lacking. My behaviour was often judged, and I grew up in a chaotic family dynamic. I earned my acceptance by trying to be perfect; I tried so hard to earn acceptance by anticipating my parent’s needs, and my parents were demanding of that perfection. I used perfection as a shield against the pain of not being enough. As hard as I tried, I never could match their perception of what is perfect, what is ideal, and it coloured my adult life in so many ways:


  • Feelings of not being good enough

  • Feelings of shame

  • Setting unrealistic expectations of myself

  • Compromising my wants and needs

  • Denying that I had needs at all by denying my emotional trauma from childhood, which resulted in the physical manifestation of symptoms decades later

 

Emotions come up like waves, they come, and they go. We deny emotions like anger, as we remember the fallout of our emotions; we perhaps froze or folded in on ourselves or hid as we were scared. We shut down, denying our feelings, unable to express our emotion. We unconsciously have learnt that it is unsafe to express ourselves, and so often try to avoid it by keeping busy, using self-soothing like eating too much, smoking, drinking, over exercising, or over working to stop these feelings that we are scared of.

 

I know I completely shut off from emotions and felt nothing in my body, driving myself far beyond what would be considered reasonable.

 

Self-care was not in my vocabulary; I often skipped meals, relying on coffee to see me through. I would go to work no matter how I was feeling, even if I had crushing headaches, where even putting one foot in front of another felt like climbing a mountain. I would return home after a 12-hour day at work to cook, clean, do the washing etc. Everything had to be perfect just in case someone in my family arrived and may criticise how I was living my life.

 

Although an adult, I still lived internally as a small child who was trying her very best to be perfect.

 

We ruminate, overthink, and deny who we truly are trying to fit into other people’s expectations, and become a shadow of our true self. If we suppress these emotions they will manifest as symptoms - in my case it was the denying of emotions that triggered my physical symptoms.

 

I realise at this point that perhaps I haven’t fulfilled your expectation of how I dug my way out of these triggers. How did I develop safety in myself to not be triggered? How did I realise that this small word ‘perfection’ had such an impact on my life?

 


Physical Symptoms

Physical movement in my case also triggered symptoms, but I know it is short-term and usually based around a physical event, and the panic/anxiety/worry of remembering how it was imprinted in my neural pathways – again down to beliefs. I remember very vividly being ridiculed at my inability to throw a ball during PE/Sports at school, this has forever given me anxiety around committing to any sports style activity. I have adapted over the years by calling sport by another name – ‘movement’ and rethinking how much time I commit to any activity, to bring it within my own capabilities.

 

These were all suggestions on how to cope with brain fog, made to me by the medical community - who have clearly never had brain fog!


1.     Spend less time on your computer and mobile phone – remind yourself to take a break

2.     Use Positive thinking, reduce stress

3.     Change your diet

4.     Get enough sleep – 7-8 hours a day, go to bed at 10pm or no later than midnight

5.     Make time for regular exercise

6.     Avoid alcohol, smoking, and drinking coffee in the afternoon

 

I would lose my ability to find words, to follow simple commands, to be able to retain a paragraph of anything I read, or the ability to complete forms. My mind closed down and appeared to be void of anything that I had learnt over the years.

 

How did I manage these worrying events? I allowed myself to be vulnerable. I openly said to people I might appear to be distant or not find the right words that would make sense to the questions you ask, and I might take a few breaths before I can provide an answer. Surprisingly people were incredibly kind and understanding. I had allowed myself to show my vulnerability, and what I did discover was that I wasn’t the only one who was struggling with this, which opened new doorways to connecting with people. I started to find my ‘tribe’ and was unapologetic for showing the real me. I dropped the perfectionist tendencies, and my mind started to free up. I also discovered that if I slowed my speech pattern down it helped me to find the elusive words and is something I still do today. Although I would consider that I don’t have brain fog anymore, it does arise if I am over tired, over committed or feel overwhelmed - but these are all things that I now have the ability to control

 


Fatigue

Oh, if only fatigue was associated with lack of sleep! I discovered that there are levels of fatigue. What I had associated in the past with feeling tired wasn’t this bone sapping, deep deep well of exhaustion, to the point that it was difficult to even draw breath or raise my head off the pillow.

 

I am still unsure of how I dug my way back out and up, but I do know that I had been living in ‘fight or flight’ for years, which had impacted on my autonomic nervous system (ANS).

 

I remember watching this brilliant animation:

It wasn’t just a penny that dropped, but a huge great boulder that created shock waves throughout my nervous system, and I started to understand that there was no single thing that could support me out of this. It took a holistic view to allow me to find a way to live my life.

 

Another thing I learnt about were the roles that these lifestyle factors all played in my burnout:


  • Adrenals

  • Vagus Nerve

  • Gut Biome

  • Diet/Nutrition

  • Environment

  • Relationships

  • Emotions

  • Lifestyle Balance

  • Movement

  • Life Purpose


When viewed together in a rounded way it could help me find a pathway out of where I found myself. 


So, I started with Pacing. I’m not talking about Pacing as in the sense of walking at a steady speed, I’m talking about going back to basics. Waking at the same time every day, creating times in the day where you do the same thing - this may be having a rest, listening to music, having a shower etc, whatever you choose must work within your own constraints.

 

Because we are such perfectionists, we tend to view our recovery as a ‘must’, ‘should’, ‘ought to do’ process. Well, please put those words/thought in the bin, take them out of your vocabulary. Instead find pockets of peace in your day. Pause, breathe, let go, otherwise you will continue to go into…..

 


Relapse

I had to learn to breathe again, to pause in between tasks. I learnt about boundaries. I also had to learn about my co-dependency tendencies, and that surprisingly I was a highly sensitive person. I really had no idea of who I was and didn’t recognise the person I had become in this chronic condition.

 

This wonderful poem ‘She Let Go’ by The Rev, Safire Rose spoke to me and continues to be a poem that I treasure and read often:



And despite all of this and so much more, I have to guard against relapse. I know what to do, but sometimes I forget to do it - life gets in the way. So, every day I set my intentions for my day, halve them, and live by the 80/20 rule of living to my authentic self.

 

Let’s look at the 'life gets in the way' scenario(s)

 

Labels

I’m sure like me you have many labels, such as:


  • Daughter/Son

  • Wife/Husband/Partner

  • Parent

  • Friend

  • Work colleague

  • Job title

  • A diagnosis

You may have many more of your own to add to this list too.

 

The day that I saw the consultant who diagnosed me with fibromyalgia and CFS, I can remember how angry I felt. He and many other healthcare professionals didn’t see me as a person, just a label, and I was determined not to let my diagnosis define me. My whole life I have been defined by labels, and these labels have often triggered my emotions - which I had denied in my search for perfectionism.

 

After many hours of study, introspection, counselling, and support from friends I started to understand that my beliefs from childhood were defining who I was, and how I lived my life.

The word ‘Belief’ has a word in the middle - ‘Lie’. Beliefs are not who we are, we can reframe our beliefs by rationalising and asking the simple question – is this true? 

 


Uncovering hidden Emotions


Trauma

I had a childhood that was very dysfunctional, but it wasn’t until I was 17 that I realised. A throwaway remark by someone rocked my world as I knew it. For me it was my norm. As with so many others, what we consider ‘the norm’, if looked through another lens might be considered as trauma:


  • Mum going into hospital to have another child

  • The first day at school, either infants or secondary education

  • Being made fun of in the family, as in – here comes the clumsy one, the fat one, the not pretty one, the not clever one

 

Each little prick into our psyche is hidden, taken into our subconscious. As children we are unaware, but as adults we can be triggered by different situations; a look, a colour - think having to read out loud as a 6-year-old and public speaking as an adult. These traumas help to form:

 

Self-Induced Pressures

Expectations/routines/overwhelm/blame/compromise

 

Low self-esteem

Perfectionist

Feeling anxious

Competitive

Conscientious

Self-critical

Reliable

People-pleaser

High expectations of yourself

Need to be good and/or liked

Strong drive to be helpful

Need to be right

Overly responsible

Need to be in control

Driven

 

This table has been taken from the SIRPA preassessment form that clients complete before starting on 1:1 sessions.

 

Expectations

The messages we send ourselves, our thoughts and our beliefs create our need to be good at everything, well rounded. How does it feel to be constantly trying to fix ourselves?

 

We set ourselves expectations, trying to reach that unsaid ceiling of what is right. This constant trying to meet our own expectations and the expectations we imagine that others put on us is overwhelming. Expectations build and build without us being aware of them. Modern living sets us up to fail. We see and hear other people’s successes and don’t question them. We often look at social media and compare our life to others. If we took the time to question, we would see how unrealistic it is to live life this way.

 

I know that in my case expectations of myself and compromising to accommodate others turned me into a people pleaser. I had a strong drive to be helpful, I needed to be in control, and this made me feel safer, more certain, more secure.

 

I created routines, I didn’t like to say no and took on more and more responsibilities. I set goals, had huge ‘to do’ lists, and as you know I became overwhelmed until my body and mind just shut down. I blamed myself, thinking it was me that was at fault. I felt shame at not being able to manage and cope, but eventually I realised that one of my keys to recovery was to decide not to compromise my own needs.

 

I looked at my values: (https://www.viacharacter.org)


  • Honesty

  • Kindness

  • Perseverance

  • Hope

  • Love of Learning

 

I learnt that our values are the guiding principles for living:


  • Values should guide and ground you

  • Values should represent who you are or want to be at your best

  • Values should set you apart

  • Values should be defined

 

Here are some tips I was given on how to achieve this:


  • Put your list of values up where you can see them

  • Have the right people in your life and eliminate the wrong ones

  • Integrate them into your regular conversations

  • Apply your values to motivate you

  • Evaluate your day at bedtime

 

Here are 3 things to stop doing:


  • Stop saying yes to everyone and everything - just because you can, doesn’t mean you should

  • Stop taking on everyone’s responsibilities, leaving no room for what actually lights you up

  • Stop initiating - I’m sure like me you get tons of ideas, but our energy works best when we respond to life and the world around us, this how you know what direction to go in

 

Compromise:

      

  • Start setting boundaries: say ‘yes’ only when you actually have the energy

  • Start playing: when you play, your raise your frequency and move your energy

  • Start responding to life: this how you are designed, you have an innate gut response. As a highly sensitive person, use this for yourself, don’t give this precious energy away to others. Use it for yourself first and then you can wrap other people’s needs around yourself, only after you do what you want to do first.

 

You don’t have to do everything at once, so just pick one at a time and play with these ideas.

 

 

Acknowledging your feelings and needs, and getting these met

(I will admit to going to google to look at Ego and Mindset)


What is an ego mindset?

At its core, the ego is simply our sense of self-importance and self-esteem. But when left unchecked, it can lead us to value how we appear to others more than growth and progress, leading us to avoid failure at all costs.

 

How do you deal with ego thinking?

 Here are a few ways that our ego shows up:


  • We compare ourselves to others: comparing ourselves with others is something our ego will always do

  • Always stay a student: put yourself in rooms where you are the least knowledgeable person

  • Never complain

  • Surrender your need for control

 

Ways to quell the Ego:


  • Take responsibility, focus on the aspects of life which you can change

  • Stop beating yourself up

  • Focus on growth

  • Take care of yourself

  • Don't speak badly about yourself

  • Show kindness to others

  • Don't value other people's opinions (both good and bad)

 

According to psychoanalysis, the ego is part of our mind that mediates between the conscious and the unconscious, helping us to create a sense of personal identity and reality testing. But here’s the thing - the ego isn’t always under control. It’s constantly processing information and experiences and can be influenced by a range of internal and external factors.


So, what does all this mean? The ego can be a protective mechanism that shields us from the pain of failure, but this protection can hinder our growth and development in the long term. To truly thrive as learners, we need to learn how to manage our ego and reframe failure as an opportunity for growth and learning. As the great psychoanalyst Freud once said, "The ego is not master in its own house". So, let’s take charge of our own learning and development by learning to tame our egos and to embrace failure as a stepping stone to success.


For more information, please visit https://elearningindustry.com/

 


Acceptance, handing it over

(first posted in 2013)

 

I feel like the term ‘acceptance’ is deeply misunderstood in our modern world. And yet, it is such a wonderfully powerful attitude to develop, and I am sure we would all generally have a happier and more fruitful existence if we were to nurture this skill.


So let me be clear, from the perspective of mindfulness, acceptance is not:


  • Giving up or giving in

  • Dropping your standards

  • Liking everything

  • Tolerating injustice


Acceptance is:


  • Seeing things as they are and not wishing for them to be different

  • Waking up to the reality of our situation

It is a skill we can develop and takes practice, if we practice it becomes easier.



Honesty, Truth, and Vulnerability


In her book ‘Daring Greatly’, Brené Brown describes vulnerability as "uncertainty, risk, and emotional exposure." It's that unstable feeling we get when we step out of our comfort zone or do something that forces us to loosen control.

 

Shame is an unspoken epidemic, the secret behind many forms of broken behaviour. Brené Brown explores what can happen when people confront their shame head-on. Her own humour, humanity, and vulnerability shine through every word. (A clip from Brené Brown's TED Talk "Listening to shame" from TED2012.) https://www.youtube.com/watch?v=iCvmsMzlF7o&t=169s

 

If you want to watch the full talk, you can find it here: https://tedtalks.social/vulnerability

 

It wasn’t until I allowed myself the space to become vulnerable and let go of the shame of asking for help and support that I started to turn the corner and become someone who I had only ever dreamt of becoming, but I still had the burning question of…

 

 

Who Am I?

When I fell apart, this was a question that kept coming up for me - I absolutely didn’t recognise this person who couldn’t make decisions, had difficulty in doing anything that required me to turn up on time, be trusted to complete tasks, or do the things we take for granted. I think I was in such shock at how quickly life had fallen apart, and I felt completely helpless and hopeless.

 

All I can say is thank goodness that I had friends. Family was mystified at what had happened, and it was so difficult for me to admit to them that I was weak (this was how I saw myself), the shame ran deep. I learnt about boundaries and co-dependency, and I shared with friends about what I was learning and asked them to pick me up on when I fell into these old behaviours.

 

I still have fears of not being good enough and realise that I have spent most of my life being driven by fear and judgement of self. What if, we stopped long enough to just work in the now, right at this moment in time? I realised that self-worth and self-esteem were very different, and most of the time I got my validation from self-worth which is about the external ‘haves’.

 

I realised that as a person I was confident to some degree in my ability to manage and strive for what I wanted but had little confidence in my abilities, so therefore my self-esteem was low. Achieving confidence in particular areas of my life didn’t necessarily improve my self-esteem, and this is something I think I will always have to work on as I unpeel the layers of my own onion as further beliefs reveal themselves.


And finally:

 


Self-Forgiveness and Self-Acceptance

‘Forgiveness is not what you think’ - so says Fred Luskin in his book ‘Forgiveness for Good’.

That's because forgiveness isn't a feeling, it's an action. Forgiveness is something you do, not something you wait to feel. After you make the conscious choice to forgive, your feelings will fall into place with that thought.

 

The good news is when you forgive, you’ll heal your life.

 

I have had to do a lot of work on forgiveness; forgiveness of my parents, my educators, and myself. It’s a daily conscious decision to forgive myself. I find that I quickly have that nasty little voice inside of me self-blaming, it happens all too frequently.

It might help for you to jot down your own self-critical thoughts and ask yourself ‘would I speak to anyone else like this?’ I suspect not!

 

You will find that if you take the time to read what you have written and speak it out loud that these thoughts are not true. Try and rationalise them, and turn them into a more positive statement.

 



 

And this is where I am going to leave you for now. Having read through what has been written, go away and give yourself time to reflect on what has resonated with you, then read through it again taking notes of what would work for you as an individual.


I know that although we have a lot in common, recovery is a very individual journey.

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