I actually thought I was used to being missing, that I’d found a way to adjust to my reality. I honestly thought it would only take a few minutes to fill out the #MMSelfies form as part of the millions missing campaign for ME/CFS Awareness Day. The form developed by Emerge Australia asked for a response to a simple question –  

What are you missing from?

Easy, just type in career, walks, dinners, holidays, movement without pain or repercussions, time with friends, giving your time generously, not paying a price for everything. That’ll do to get the general gist, no need to go on and on, its only supposed to be 150 characters. But instead I just stared at the blank box. A list didn’t seem sufficient, it couldn’t encapsulate what it was like to be missing from all those things. 

Glancing from that blank box to the bedroom window I could see it was a radiant, crystal clear day, one of those change of season days were the breeze has just a hint of the coming winter. I could hear laughter and music coming from neighbouring apartments and casting my attention to the tv I watched as a reporter asked a picnicking family about their weekend plans now that the state government had relaxed some of the social distancing regulations. The interviewee was beaming with happiness that she now had things to look forward to again. 

While I pondered that simple question my partner was on a 10km walk along the beach and the more I tried to come up with an answer the more it felt like I was trying to digest a giant emotional layer cake. The first layer has the sweetness of expression, of being seen, but facing it forces you to bite into a layer of bitter anger that leaves an after taste of pure sadness. 

The answer I eventually settled on was-

Missing from being somebody in the world. Being somebody who doesn’t have their hopes and dreams on hold.

So, obviously, there’s more adjusting to be done. Especially since my little emotional roller coaster made me want to throw my laptop out the window, and I really love and need my laptop. But the whole point of the awareness campaign is that it’s not acceptable to be missing from the world. To all the researchers and campaigners who are working on ME/CFS I thank you for the ray of sunshine you pour into our darkened rooms.

To those who boldly and bravely tell your stories regularly or for the first time take care of yourselves and take solace that you are heard, you are seen, you are not alone. 

In case you’re wondering if the emotional roller coaster led to an actual piece of cake –  There’s eating your spiralling feelings and then there’s eating to jolt yourself out of the spiral.

Serious ME/CFS Contributors

There are so many amazing people around the world working on ME/CFS research, advocacy and community support. The first site I will highlight is How to get on. Its incredibility informative especially for those in the USA and its also beautifully illustrated. A journey through the fog is also a great site from the UK. For an Australian summary of both research and how to access help and resources Emerge is fantastic and of course there is the amazing work being done by ME action groups across the world.

UK ME Action 

US ME Action

AUS Me Action

List of other national and regional groups.

Image Credit: Artwork by Elizabeth D’angelo check out her website for more beautiful artwork as well as ME/CFS blogs and details on commissions.

Many more serious and experienced contributors will be sprinkled throughout my blogs. 

Let me know what’s the best source of information where you are.

Reaching for something, over and over again

Some people have never been housebound before…and it shows.

I do not point that out to diminish anyones pain, hopefully, what is missing from their life is only temporary. Nobody needs to justify or qualify why it feels like a dark day. It just is. But two things can be true, I can empathise deeply with peoples loss and at the same time feel the sting of watching others mourn what has been lost to me for so long. Those of us who have been housebound for a while understand their grief and bewilderment that this could be their lives now, so small, so confined, everything tantalising just out of reach. We understand the pain of having hopes dashed and dreams on hold. To have no control, to be lost without the things that define you, like an identity and role reinforced by your work and/or relationships. To realise your self-esteem is built on a house of cards that can easily be blown over. To have lost the normality of a life perpetually in motion as somebody out and about in the world.  Empathising does not mean it stings any less that some of us have spent decades trying to adjust to a smaller world, and that even in the sameness of isolation, those with chronic conditions are still experiencing a world-wide event differently.

Many people are still living big lives, even in self isolation. By getting things done, being purposeful, engaged and occupied and keeping their self-esteem afloat by the completion of daily tasks and gaining confidence in their ability to adapt and face their fears. 

Anyway, the thing is, I have to run my own pandemic race, so the energiser bunnies who are not pulling their hair out trying to educate or occupy their children while working from home may have their high octane, at home work outs and fun dance routines but I’m giving you ‘Flying Geese’. Fun for all ages for about 60 seconds or odd distraction for about 3 seconds.

The Dark Parts

If you’re feeling a little overwhelmed by the world right now I would suggest doing the – Open Your Eyes and Ears meditation before reading on. It can’t hurt to get a little grounding before we talk about the stuff most of us don’t really want to talk about.

The world over people are terrified of dying or terrified of how they’re going to live without incomes or homes. Not to mention the horror of what those that are homeless or in unsafe homes are dealing with. 

In the midst of such a world-wide crisis I’ve been struggling with how to put my own fears into perspective. To have any sense of objectivity about where my situation fits along the scale of – be kind to yourself, it’s a lot and – get over yourself, you have so much to be grateful for. But the reason for starting this blog was about finding a way to share with others who have chronic conditions. I am hoping we can help each other find the language to describe what its like. Because most days, just finding the right noun is an achievement. So discussing raw emotions or deep and meaningful thoughts tend to be way too hard.  

So, l guess I should start the process by sharing one the darker parts that I’ve been thinking about that’s a little different to the obvious, will I or a loved one get it or will I survive it, given my existing risk factors that are seperate to ME/CFS. Unchecked, my worry tends to pool around the thought that if I had to aggressively fight off COVID-19 what baseline would I be left with. A simple cold can take months to fight off and anything more than a cold tends to reduce my baseline, so that my energy packets I use to get the basics done are more infrequent and don’t last as long. I wistfully remember when it used to take days before I crashed into the wall rather than one outing. I swing between positive and pragmatic about getting or surviving the virus but I linger in the dark place when I think about what comes after and not just for me, researchers are already warning that this virus may lead to ME/CFS for those that were previously healthy.

Of course I could try to draw on a million different quotes, poems or stories about strength, courage, adaptability or resilience, but for now, I’m just gunna watch some puppy videos because all things considered, both things are true, its all a lot and I do have so much to be grateful for.   

While I’m here I should also admit to the, not quite dark, but defiantly heavily shadowed, less than empathetic thoughts I have about how healthy people are coping with being housebound for the first time but I’ll leave that till the next blog. 

If you want some help to reduce the intensity of the dark place try the meditation E words – You’re not the only one who finds emotions hard. There’s a reason therapists get paid a lot of money.

After you have done that I would recommend doing step four of the first mediation again even if you didn’t scoff at it the first time around. So technically I’ve asking for about three minutes of your time today. Not sorry.

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. 


A link in the chain. If you are so inclined

Most of us were experiencing the world differently to those who were out and about and now we’re experiencing the world differently than those who have been told to stay home. Being accustomed to being home bound and/or bed bound or used to feeling vulnerable because of our precarious health situation doesn’t make this any less unprecedented for those with ME/CFS. We’re feeling all the feelings but with so many people hurting and distressed it may not feel like the time for a ‘woe as me’ attitude. But you’re entitled to your feelings and your feelings are valid, you don’t have to be the perfect example of resilience and courage all day every day. 

What will help is normalising what we’re feeling and how we’re coping. When you have a chronic condition that separates you from the world there is enormous comfort in sameness. With so little energy it’s hard to know how to find a way to help others but we can help each other by sharing our stories. Doesn’t have to be pages and pages, maybe it’s a word, a picture or an emoji, just one link in a chain to let each other know we’re here, we’re listening, we understand. If you’d like to be a link in the chain click here.

All right then, thanks for putting up with the platitude laden prose, it’s just that loneliness sucks and emotions are messy but seem manageable the moment someone else admits to feeling the same. Plus some people are just better at putting it into words, so to those people I would ask you, when you feel well enough to help out the rest of us who take a stuff every emotion in a box, lock it, shove it into another box and throw into the nearest volcano type approach.

Not interested in sharing or need a prompt for where to start in letting it out of the box try the one minute meditation –

If people could walk a mile in my shoes…Or possibly, more accurately, restlessly lie down in my pyjamas.