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Who am I and why am I doing this

There has never been a good time to have ME/CFS but there has definitely been less stressful times to have a chronic condition and an uncooperative immune system that continues to have an open door policy despite my objections.

I know I’m asking you to use some of your precious energy packet to keep reading but I’m hoping we can help each other. My plan is to provide a way we can normalise and externalise the million pesky feelings wer’e all inundated with right now and maybe not feel so alone.

The main aim is to provide a way for others to share how there’re feeling, what’s helping getting you through, what’s not helping and what topics you want to talk about through the Your Story page.

No promises that it won’t get a little dark but hoping to infuse some humour into this situation, especially about the less than empathetic reactions to people discovering what it’s like to be housebound. My plan also includes providing a little counter programming to the endless suggestions and resources to help people stay connected with virtual socialising, do they have any idea how exhausting a simple phone call is? Or the ever so popular work out videos to help people who are stuck at home deal with all their restless energy. I’m just trying to come up with things that require as little energy as possible but might actually distract me, even if it’s only for a minute.

There’s also the flip side of the less than empathetic moments when you desperately want to be out there finding a way to help others, especially those that don’t have a roof over their heads or live in domestic violence situations. But your ability to help is so drastically limited because of the symptoms that keep you bedbound or housebound most days or the risk of further compromising health is too great.

In so many ways I’m as lucky as it gets for people with a chronic condition, I have a roof over my head, food in the fridge, enough medication for a couple of weeks and enough energy to be making words into sentences and tapping away on my laptop propped up in bed but (here’s the part where I share something I don’t really want to but have to because I’ve made a song and dance about normalising and externalising feelings) I hate the fact that I can’t do my job as a counsellor when its needed the most (If you’re playing along at home that was a thought, the feeling underneath is helplessness). So now I’m going to project my feelings of helpless onto you in a totally well-adjusted non-airy-fairy-self-help kind of way. I’m going to start a list of one minute meditations. If it makes you feel any better I do have the relevant bits of paper and work experience to sift through the research to find the type of tools that are applicable and effective.    

Be warned, I’m leaning in really heavily to the irony of constructing a list specifically for people who are like me, fed up with being told what to do about their health. Who’ve had their psychological wellbeing treated as if it was the cause of all their problems rather than a natural reaction to having your life go to shit. 

I am hoping to offer a bit of reprieve from all the healthy people suggestions of how to get through and share my own annoying suggestions. Here’s the first one – Its cold…that’s it…that’s the point.

This site is a work in progress, there is so much more to come. For obvious reasons its taken a long time to get this website up and running and there will be days ahead where putting a sentence together will feel like trying to construct a 1000 piece jigsaw puzzle so I’m going to try to keep it simple but hope to expand on ways for you to share. Then I won’t be the only one being “that person” who’s giving their two cents. 

Also really want to expand on links and resources but just wanted to get something out to get the ball rolling.

Cliché warning : Let’s do this together…in a non-exhausting kind of way.

Also on a side note I’m using COVID-19 as an excuse for any and all mistakes in the copy. Rigorous editing will be undertaken in non pandemic circumstances (hopefully). I apologise to those they are triggered by bad grammar but even in non pandemic circumstances  sentences are hard. 

 

Ensō Meditation

Before we Begin


In case you need me to say it again, I am not in any way suggesting you can meditate, relax or breathe your way out of chronic illness symptoms. The tools on this website are a way to get through the moment, a distraction when intense emotions are threatening to overwhelm us, as well as providing a way to find a little bit of solace.


The Ensō Meditation below is adapted from a Zen Buddhism practice. It offers a slightly more abstract way of tapping into self care and can be a simple or as deep as you need it to be. Take a look and see what you think.


The Enso Meditation


Fierce Compassion Follow up

Just a nudge


Adopting fierce compassion doesn’t have to mean becoming a totally different person who emanates self-compassion at all times. It only requires one small step or one small nudge in the direction of being kind to yourself.


You can start with just one compassionate thought, something soothing or validating.  E.g. I’m doing the best I can. I am enough. I have a right to protect myself from harm. If nothing comes to mind try thinking about something comforting that you might say to a friend.


You can also think about one compassionate action, like saying yes to help or no to something that is outside your energy capacity or likely to cause PEM. Or perhaps spending a little bit of your energy envelope on something that gives you a little joy or solace rather than spending all your energy on chores or doing things for others.


Why self-compassion is important


Self-compassion is important because when you are being critical of yourself, putting yourself down or judging yourself the antidote isn’t building up your self-esteem, it is having self-compassion. This is especially important for chronic illness sufferers as we don’t have the usual avenues to prop up our self-esteem.


Self esteem versus self-compassion


Studies show having high self-esteem does not help counteract self-criticism as well as the ability to be self-reassuring. Therefore at times when our inner bully is particularly loud we can protect ourselves a little better from the negative impacts of self-criticism by focussing on compassion rather than building up our self-esteem. 


Let me give you an example. It will come as no surprise that social situations are a rare event. Even though now days I only see loved ones briefly, it occurs so rarely that I battle a growing level of social awkwardness and anxiety. It’s compounded by the fact that my life is so different to those out there in the world it can be incredibly hard to feel connected and of course even harder to feel seen and understood. 


In the past I had enough energy to adopt a “fake it till you make it” state of mind that definitely helped get me through at the time. But due to energy limitations it’s no longer possible and also no longer something that serves me well. I could try to make myself feel a little more confident or comfortable by listing all the communication skills or abilities I have or thinking of all the other challenges I’ve overcome.  


Or instead of spending my precious energy and spoons on the mental gymnastics required to provide counterpoints to my insecurities and inner bully I can approach the situation with self-compassion. By acknowledging it is ok to not be okay, there is absolutely nothing wrong with being socially awkward and it is completely understandable. 


Making meaningful connections is difficult even under the best circumstances. When you’re exhausted before you even begin a conversation and have a dozen symptoms competing for your attention it’s normal to find forming and maintaining a deeper connection hard. It’s also easier to revert to more superficial interactions when your resources are depleted but the lack of resources is also the reason there is little energy or desire for polite/performative small talk. 


So, to be able to walk into a social situation (and very quickly sit down) I don’t need to muster up genuine confidence or mask my anxieties and insecurities with false bravado. I don’t need to justify myself or change the way I feel, I just need the same amount of compassion for myself as I have for others. 


Obviously all the obstacles and challenges of being upright and trying to hold a conversation while dealing with a chronic illness remain but at the very least you can quieten your inner critic because self-compassion is a pathway towards accepting yourself, where you are, now.  


If you need a gentle nudge towards self-compassion try this mediation


Your Compassion Colour.



Fierce Compassion

If only it was as easy to apply self compassion as it is to show compassion to the people around us.


Because we live in a society that rewards and reveres productivity and a “push through” mindset, we have to protect our health and well-being by applying a level of self-compassion that is kind and gentle yet courageous and fierce. To ease you into the duality of self-compassion I’ve added a new resource that uses a yin and yang approach. 


The Yin represents your innate kind heartedness that can be turned inwards once you are able to validate your suffering. Embracing the Yin requires acknowledging how incredibly hard it is to live with a debilitating, chronic illness.  Acknowledging that you deserve self-care and do not need to earn it and that you deserve to be protected from things that harm you. 


The Yang represents the protective strength you already possess and focussing that on yourself. Embracing the Yang requires acknowledging the courage you have already shown to survive and manage your condition. Acknowledging that you deserve to put your health first without needing to justify your self-care boundaries.


Even if you are surrounded by people who may not be supportive or understanding the goal is to give you a sense of calmness and stability in the Yin and protective strength in the Yang. 


Even if you still think compassion is only something you apply to others then consider this, the wonderful thing about fierce self-compassion is that it isn’t just about you. Every time you show self-compassion it’s a shining light that creates a permission structure for others to do the same.


This tool was adapted from work by Elaine Houston and Dr. Kristin Neff’s ‘Fierce Self-Compassion Break’.


Scroll through below or click HERE for the full page version.


Still Missing

Nothing exemplifies that you are missing from you life quite like realising your last blog was almost a year ago and the topic was (irony of ironies) Millions Missing 2021.


So it would seem regular blog posts or even irregular blog posts are not achievable at the moment. But that’s ok, for now, because I’ve found a different form of expression that I’m attempting to turn in a fundraiser for Emerge Australia.


If you’d like to take a look click here or check out some examples from the links below


Emerge Fundraiser


Language of the Chronics


Pacing Mantra


ME/CFS Awareness Stickers


While I will be using this blog to plug my Redbubble products for the fundraiser I’m really hoping the messages on the products might provide a little solace or solidarity. Sometimes you just need to know that someone else understands how hard it is.


So for anyone who needs to hear it…

SELF CARE MOTTO

Millions missing – Millions more hoping they won’t fade from view

ME/CFS Awareness Week

The Bitter

The inability to keep avoiding the flash of recognition of how many more things you are missing from than last year.

The volume of campaign events and activities that you will be unable to attend even virtually.

The apprehension that telling your ME/CFS journey in full is grievous information for those who may have been recently diagnosed, currently only experiencing mild symptoms or worried about outcomes for Long Covid.

Sad and mad that ME Awareness is still necessary.

Concern for those in the ME/CFS community who may be putting their health on the line to organise and participate and sadness for those who desperately want to participate but due to their health are missing from millions missing.

The sweet

Feeling the solidarity and affinity with an amazing community.

Cherishing the healthy allies willing to help.

Grateful to those who have cast an eye over the campaign and seen what may have been invisible to them before.

Hopeful that the campaign has reached some uniformed or ill-informed health professionals.

Knowing that those looking for answers or support have seen the resources available to them to help find a pathway to diagnosis, manage the symptoms and feel less alone.

The life affirming

Finding pieces of yourself reflected in others words and artwork and discovering new ways to pick up the threads of your own arrested story.

To the millions missing and millions more desperately hoping you will not fade from view – You are seen and you are not alone.

Check out these links to see more amazing members of the community sharing their millions missing stories.

Emerge Gallery

ME Advocacy Network Australia

Positivity without profound cognitive dissonance

As evidenced by my recent posts, I’ve been on a quest to find inspiration and words of wisdom that don’t require an extreme amount of cognitive dissonance from the reality of living with ME/CFS to embrace the proposed positivity and hope. Not long after posting the last blog I found someone on a similar quest in an ME/CFS forum. So with the help of others I’m hoping to update my repertoire soon. 

But for now I’d like to take a completely different approach to finding words of solace and incorporate an adage that doesn’t assume you have the energy of a warrior charging into battle, or an expansive reserve of optimism just waiting to be pumped to the surface. What I’ve chosen also helps me to surrender any merit based system of judging my daily activities. It provides a little counter-conditioning to society’s predilection for only placing value on the utility of endeavours or conversely the amount of joy or pleasure experienced. That can conveniently, easily be judged by how well you can distil your fulfilment into a curated social media post. 

The words I’ve chosen are not an affirmation or mantra, just a statement that resonates with me, that doesn’t require either a bold or silent strength.

Art washes from the soul the dust of everyday life *

This works best if its combined with the maxim that what you decide is art… Is art. That means the little dalliances in arts and crafts activities that range from clay jewellery to photography is a form of art, regardless of the aesthetics (or lack thereof) of the outcome.

It is true that I shouldn’t need a label of “art” to elevate an activity to something meaningful or of value. But the mental gymnastics required to reject society’s expectations of acceptable use of your time is too exhausting. Educating others on why it’s not possible to be living a life out and about in the world is exhausting. Constantly monitoring and pushing back on your internal critique is exhausting. So my preferred coping mechanism is a quick reframe and re-ordering of prestigiousness that helps make a small life feel a little bigger. It also means on the bedbound days, when music or a tv show are the only accessible activity, you can, if you chose, elevate your entertainment options to art.

Art can’t necessarily wash away the metaphorical dust attached to the inescapable limitations and vulnerabilities of a life with ME/CFS. But sometimes you need a song, a character, or a poem to remind you you’re worthy even when you’re not feeling it. To remind you that others are struggling and finding a way to survive. Writers, actors and singers are often communicating through their own open wounds, it is neither idle, frivolous or wasted time to step into their worlds.

Whether its cathartic, entertaining or just washing away some boredom it helped you endure and therefore it was meaningful and purposeful.

NB. The chosen adage has been slightly changed from the original quote due to the problematic source who doesn’t deserve any further credit or acclaim. If you wish to know the source continue reading. I am choosing to reclaim the sentiment of the words while rejecting the speaker of the words.

*Quote source: Pablo Picasso 

Image source: University of Luxembourg https://wwwen.uni.lu/media/images/art_is_everywhere3

Too tired to be inspired

“This too shall pass,” was once the evergreen motto that got me through, but as things have become much, much slower to pass, if at all, I’ve tried to look for a substitute to latch onto only to find myself lost in an ocean of silver linings and rose smelling versions of ‘chin up’. Or slapped in the face with the motivational quip tucked into everyone’s repertoire, ‘You have nothing without your health’ or better yet ‘Your health is your wealth’. 

Inspirational, quotes, mantras, motivational mottos and affirmations have their place in providing us with a way to refocus to the present or the positive, give hope, perspective courage or peace. If utilised at the right time they can be transformative. But on the bad days, words of wisdom need a little more lived experience of chronic conditions, a little more ME/CFS context to the grand aspirational proclamations. 

It is true that you need to find the small things and the small moments that can transport you, like the beautiful cloud, moon, breeze or soft pillow. But it’s also about what it takes to survive outside those moments, when it’s hard to lift your head off the soft pillow. Most of the extremely popular self-help and positive thinking resources are based on the premise that anything is possible e.g.

If you believe it will work out you’ll see opportunities. If you believe it won’t you will see obstacles.  Wayne Dyer. 

The perfect world is created as the mind is free enough to see it. Byron Katie.

Imagine your life the way you want it to be . The Secret.

Slow down and everything you are chasing will come around and catch you. John de 

Paola 

If you are facing in the right direction all you need to do is keep on walking. The Buddha

Obviously I get what they are going for with this but there are immovable obstacles in your path that come with chronic conditions. They don’t disappear with positive thinking. Most people are doing their best to refocus so their symptoms aren’t all they can see, feel or think about. But conversely it’s not beneficial for them to be unseen, unfelt and unrecognised. 

There are still a few oldies but goodies, the list below is a bit of a potpourri of themes and they aren’t particularly deep and meaningful but I find each has helped at different times with radical acceptance that it’s a shit day, don’t try to pretend otherwise:-

Breathing in, I see myself as still water. Breathing out, I reflect things as they are. Thich nhat hanh

Meditation practice isn’t about trying to throw ourselves away and become something better. It’s about befriending who we are already. Peme Chodron.

I came to see the damage that was done and the treasures that prevail. Adrienne Rich

The wound is the place where the light enters you. Rumi

The world breaks everyone and afterward many are strong at the broken places. Ernest Hemmingway

Be kind for everyone you meet is fighting a battle. Plato

I will not allow anyone to walk though my mind with dirty feet. Mahatma Gandhi.

Some of us think holding on makes us strong; but sometimes it is letting go. Hermann Hesse.

If you’re going through hell, keep going. Winston Churchill.

When you reach the end of your rope, tie a knot in it and hang on. Franklin D. Roosevelt. 

That hardest thing is this life is to live in it. Be brave. Live. Buffy Summers. (If you know, you know)

Comparison is the thief of joy. Theodore Roosevelt

Sometimes the healing is in the aching.

Obviously, all this is a quest for some magical abracadabra type words that make it all seem endurable, when possibly and annoyingly the most helpful words of wisdom (for me at least) for getting through ME/CFS is:-

Be kind to yourself.

I have one last one to offer that has weirdly helped on the days when you have small packets of energy but need to not overdo it. It requires that you imagine a really cute donkey when you say it.

You’re like a donkey, you just keep plodding.

Feel free to comment on or share any of the other million quotes and affirmations that help a little, a lot or not at all.

*Please forgive errors in accuracy and the unattributed quotes. I’ll try to add in sources where possible.

Image Credit: https://www.pinterest.com.au/johnnowicki/for-the-home/

Acceptance Part 2 – Apparently acceptance looks like a sleeping mud maid

I came across the above photo via @womensart1 tweet. For me it just seems to epitomise my idea of acceptance. The “Sleeping Mud Maid” sculpture by Sue and Pete Hill is located in The Lost Gardens of Heligan. I’m guessing a therapist or any pop psychologists out there might have a field day with that declaration. I’m sure there are a few layers to be unravelled (beyond the obvious reasons) that I see a sculpture of a sleeping woman as a symbol of acceptance for a condition that leaves you bedbound. I’m guessing for some seeing the beauty in the sculpture might in fact represent complete denial. 

I mean let’s just put aside for a minute that she is literally green and I normally go green with envy at those that can actually achieve a peaceful slumber when required or desired and flare with exasperation at those that think needing a little rest is the same as – hit the wall – have to be parallel to the ground for the next three days, at least. 

But for some reason, there is something about the fact that the sculpture depicts someone figuratively and literally grounded, though somehow not stuck and effortlessly balanced and at one with her surrounds yet also unique and distinct. She is also a little wild and strong enough to be open and exposed. 

Yep, its lot to read into a garden sculpture but that’s the whole point of art… Right? Plus it all relates back to the complexity of acceptance for those with ME/CFS. People treat it like a concept or goal to be achieved yet it’s an emotion that therefore cannot be a permanent state. We all contain multitudes, a little anger and resentment sometimes or other times a lot, sadness and despair in small and overwhelming doses. Strength and weakness, both usually when you least expect it. As well as some perspective, some gratitude, grit, grace and hope. 

For right now, it doesn’t have to be more complicated than I see the mud maid’s peaceful repose in the English country side as capturing a moment of true serenity, a moment where acceptance is possible along with healthy unacceptance where necessary.

Image credit: www.heligan.com

Just as a side note, in case you were wondering, other reactions to the sculpture by visitors to the gardens range from – “That’s cool.” to “That’s oddly terrifying.”