There is a constant knot in the pit of my stomach. Hidden in the dark murky place where emotions mix and churn as they evade logic and reason. Holding onto one end of the knot is the person I am now, tugging at the other end is the person I want to be. Accepting I have to let go of the person I want to be, is in theory, the pathway towards the chronic illness jackpot of psychological flexibility.
But for so many with ME/CFS acceptance can feel counter intuitive to the ongoing struggle for recognition and advocacy for research leading to diagnosis and treatment options. It can also feel like giving up on hope that this won’t always be your life. Acceptance and pessimism can feel too closely related. The complexity of the tug of war between opposing sides means the same cognitions that loosen the knot also tighten the bind. For me, acceptance isn’t tangible or all-encompassing its temporary and conditional.
For today, the tug of war is over my 4 draw filing cabinet. Just a plain, utilitarian, silver workhorse that I’ve had for over a decade. Its taking up too much room in my corner of the house, so it’s time to give it away but it’s about more than just economy of space. It needs to go and yet I hate that it has to go. You see it is filled to the brim with work files from businesses I had before I got too sick and businesses I tried to start to accommodate my reduced energy levels and future plans for when I wasn’t so sick. It has taken me many years to figure out holding onto all that wasn’t making me feel positive about the future. The filing cabinet is draws full of loss and self-recriminations and unrealistic expectations. It’s miniscule in the scheme of tectonic events happening around the world and yet it’s enough of a personal earthquake to add to the tremors from everything else.
I took the first step and gave away the last 2 work shirts I was holding onto in case things turned around. You know the type, non-iron, used for uniforms from hospitals to real estate agents. The type you can pull on at a moment’s notice if you need to look professional or employable. In giving them away I was accepting recovery isn’t going to happen at a moment’s notice.
The mantra for now as I sort through the files for shredding, chucking or keeping is to accept that this process will entail waves of resentment, anger and disappointment loss and frustration, the usual kaleidoscope of messy emotions. But once done it will be better than being slapped in the face with those emotions every time I see the filing cabinet. I accept that right now I am better off not seeing all the things that didn’t work or all the evidence of the ways I incrementally kept scaling back my working life to accommodate for less and less packets of energy. I accept I am better off not seeing the evidence of endless hours of precious energy expanded on experimenting with ways I might be able to earn money or use my skills but my body and mind kept rebelling more and more.
I don’t need to see a representation of the years of fighting against the reality of my declining health or all the times I refused to manage or pace myself and therefore made things worse. I can let go of all the things I did before I accepted it was a severe biomedical disease and that I didn’t require a separate diagnosis to explain the multi system failures. I understand that ME/CFS is the reason I couldn’t do my work not that I just couldn’t find the work that would fit ME/CFS. So therefore getting rid of the filing cabinet is a pledge to bestow the same understanding and kindness I’m seeking from others upon myself.
I accept I don’t need to hold onto all those work files just in case things start to turn around tomorrow. I accept that if my health improves I will have to slowly update my skills and tools anyway. Holding onto to outdated resources and information isn’t helpful.
My new reality doesn’t have to be without hope. Hope is a choice – hope to dream- dream to hope. It just has to be without judgement. I can give myself permission to carve out a corner of the house that doesn’t represent old dreams and goals, its not a space for my old identity or the internalised expectations of what makes you a valued member of society. It has to represent what I value now and what lets me have moments of peace.
Acceptance as defined by those with other conditions or situations doesn’t have to be part of my “I should” list. I accept I don’t have to fully untie the knot. Ironically, my psychological flexibility comes from accepting the tug of war is part of this journey (sorry can’t think of better word than journey) and therefore I accept both – acceptance for me is both the key and the lock.
Obviously I stumble on and off the pathway to peace so happy to receive any suggestions. Let me know what works for you.
Unable to attend #BlackLivesMatter protests but want to find a way to support the movement take a look at the range of options compiled by Black Lives Matter Australia. I also recommend taking a look at a great article by By Wilhelmina Jenkins – Unseen: Black people living with ME
Image Credit: ABC News: Tim Swanston – Brisbane protest
#BlackLivesMatter in Australia
WARNING: Aboriginal and Torres Strait Islander readers are advised that the following resources contain names and descriptions of people who have died.
This resource was written on the lands of the Dja Dja Wurrung and Taungurung people of the Kulin Nation.
This list and draft letter is meant for Australians in support of the #BlackLivesMatter movement who want to take action in Australia. If you don’t know what to do or how big Australia’s problem of policing and incarceration of Indigenous Australians is – this is what you need to know.
These resources do not replace or illustrate the experiences of individual Indigenous Australians and they are not meant to be.
It is merely a starting place of understanding what issues face Indigenous Australians. Do your part by reading the resources mentioned below. I highlightEnd Black Deaths in Custodyand the Uluru Statement from the Heart because it’s the most recent and relevant resource that talks about the impact of policing on First Nations communities and the need for a First Nations voice to Parliament.
And if after reading all of that, you want to instigate change, send a letter/email to your MP demanding change (draft letter below). But educate yourself first.
Note: This resource is focused on information about Indigenous Australian issues. I have included links to other lists and resources focusing on the US below.
Share Our Pride: Website by Reconciliation Australia, an interactive website giving you a perspective into the lives of Aboriginal and Torres Strait Islander peoples
Deadly Connections: an Aboriginal Community Led, Not For Profit Organisation that breaks the cycles of disadvantage and trauma to directly address the over-representation of Aboriginal people in the child protection and justice system/s.
ANTaR: a national advocacy organisation dedicated specifically to the rights – and overcoming the disadvantage – of Aboriginal and Torres Strait Islander people
Indigenous Social Justice Association Melbourne and Sydney: Aboriginal rights campaign group, especially in relation to deaths in custody.
Sisters Inside: Campaigns for and supports women in prisons
Children’s Ground: Bringing reform for Aboriginal children on five platforms: learning, health, economic wellbeing, culture and community
Common Ground: Sharing First Nations cultures, histories and lived experiences. First Nations-led not for profit.
BlakBusiness (Instagram): Sharing Aboriginal and Torres Strait Islander businesses + accessible info on topics relevant to mob
Black Rainbow: A national advocacy platform and touchpoint for Aboriginal and Torres Strait Islander Lesbian, Gay, Bisexual, Queer, Transgender, and Intersex (LGBQTI) peoples
Podcasts/Radio
AWAYE!: ABC RN podcast featuring stories and advocates about Indigenous Australian issues
Speaking Out: ABC RN podcast featuring Indigenous perspectives on politics, arts and culture hosted by Larissa Behrendt.
Let’s Talk on 98.9FM: A national Indigenous current affairs radio program and podcast based in Brisbane, featuring Indigenous journalists, elders, activists and academics.
Curtain the Podcast: A podcast digging deep into the pervasive flaws of the Australian justice system. Hosted by Amy McQuire and Martin Hodgson.
DONATE: If you want to support BLM in the US – donation links to bail funds and organisations here
Note: If you would like a resource included, please email goodmorningpod@gmail.com or DM us at @goodmorning.pod (IG) or The Good Morning Podcast (FB page).
DRAFT LETTER/EMAIL TO YOUR LOCAL FEDERAL MP
NOTES: Please fill in the information that is highlighted (find your local MP’s contact here) AND attach a pdf copy of the Uluru Statement of the Heart to your email
*Letter has since been edited on 6 June 2020 to update the newest campaign from Change The Record. Please focus this letter on your federal MP. Letters to State MPs can be found below.
Dr / Mrs / Mr / Hon { insert your MPs name here} MP
Member for {insert your electorate name here}
PO Box { number }
SUBURB STATE POSTCODE
Dear { insert your MP’s correct name here – including if they have Hon. In their prefix },
Re: AUSTRALIAN FIRST NATIONS RIGHTS & DEATHS IN CUSTODY
My name is {your name}, and I am a constituent in your Electorate of {insert your Electorate name here}, and an active voter in Federal and State Campaigns.
I am writing to you today as I need my position noted and recorded by your office on where I stand on First Nations Issues for our nation, so when you represent your constituents in Parliament on any First Nations issues, including voting on any legislation that affects First Nations rights, you in fact have a correct representation of where your constituents stand.
I am deeply concerned that Australian politicians, yourself included, are not taking the human rights of First Nations peoples in Australia seriously enough. This will be the policy I will be basing my vote on in 2022.
As of December 2019, Aboriginal and Torres Strait Islander prisoners represented 29% of the total adult prisoner population (Australian Bureau of Statistics, 2020). Aboriginal and Torres Strait Islander people are also 7 times more likely than non-Indigenous people to be charged with a criminal offence and appear before the courts (Australian Law Reform Commission, 2018). The UN Special Rapporteur on the Rights of Indigenous Peoples reported in 2017 that ‘the extraordinarily high rate of incarceration of Aboriginal and Torres Strait Islanders, including women and children, is a major human rights concern.’ (Tauli-Corpuz, 2017, p. 12). Additionally, there have been more than 400 deaths in custody since the 1991 Royal Commission into Aboriginal Deaths in Custody (The Guardian, 2019).
This is not acceptable. I draw your attention to End Black Deaths in Custodywritten by Change The Record, which calls on the federal implementation of five recommendations to end deaths in custody.
I am deeply concerned about the current treatment of Indigenous Australians by the police and prisons. {as well as events/incarceration rate in my local community – if applicable, please do your own research viaThe Guardian Deaths Inside database orAustralian Bureau of Statistics}
I note that only Victoria, Queensland and the Northern Territory have begun the process of preparing treaty negotiations to promote the self-determination of First Nations peoples in Victoria. Self-determination of First Nations peoples is a right within the United Nations Declaration on the Rights of Indigenous Peoples (articles 3, 4 and 18). The lack of respect by the Federal Government and State Governments of First Nations rights to self-determination was recognised by the UN Special Rapporteur as alarming and contributory to aggravating the escalating incarceration of First Nations Peoples (Tauli-Corpuz, 2017, p. 7).
Therefore, I would like you to note the following statements:
I support the establishment of a federal First Nations Voice to Parliament that is constitutionally entrenched as per the Uluru Statement from the Heart (please see attached).
I would like to hear your position on these recommendations and how you will be voting on them. I trust as a Member of Parliament you are in fact doing your very best when it comes to representing us, your constituents, but I am asking as a voter, in 2020 for you to do better.
I look forward to receiving a reply from you on this matter.
Australian Law Reform Commission, 2018. Pathways to Justice – Inquiry Into the Incarceration Rate of Aboriginal and Torres Strait Islander Peoples, s.l.: Australian Law Reform Commission.
Tauli-Corpuz, V., 2017. Report of the Special Rapporteur on the rights of indigenous peoples on her visit to Australia, s.l.: Human Rights Council.
If you have sent Version 1 of the letter and would like to send an updated version to your Federal MP:
Dr / Mrs / Mr / Hon { insert your MPs name here} MP
Member for {insert your electorate name here}
PO Box { number }
SUBURB STATE POSTCODE
Dear { insert your MP’s correct name here – including if they have Hon. In their prefix },
Re: AUSTRALIAN FIRST NATIONS RIGHTS & DEATHS IN CUSTODY
My name is {your name}, and I am a constituent in your Electorate of {insert your Electorate name here}, and an active voter in Federal and State Campaigns.
I have previously emailed you regarding my concern about First Nations deaths in custody. I would like to further note that I support Change The Record’s recent call for the implementation of five recommendations to end deaths in custody. This is detailed in End Black Deaths in Custodywritten by Change The Record.
I would appreciate your support for these five recommendations. I would like you to call on the Prime Minister and National Cabinet to implement these recommendations as soon as possible.
I look forward to receiving a reply from you on this matter.
Kind Regards,
{Your name here}
{Your address here}
{Your mobile here}
{Your email here}
FOR VICTORIANS: LETTER TO PREMIER DANIEL ANDREWS
Written by Indigenous Law Students and Lawyers Association of Victoria, Tarwirri. Sharing with permission from Mason Peter. Access here.
A friend calls you. After you say, “hello.” The friend replies, “you don’t have to tell me. I can hear it in your voice.”
What would you hope friends and family could intuitively understand about what you’re going through?
That was the question I posed as one of my One Minute Meditations for ME. The exercise was about accepting that while we can’t control whether someone will understand what we’re going through or react in the way we desire when we tell them about what its like to have ME/CFS we can externalise it by writing it down which helps to take some of the rawness out of the yearning to be seen and understood.
Thanks to the #millionsmissing campaign this past week I found that Jo from A Journey Through the Fog asked the question more directly and a whole group of people who not only answered the question but also shared it with others. You can click here for a link to her blog explaining the motivation for the campaign.
You can find peoples answers via Jo’s website or #MEwishes or through several other platforms.
Huge thank you to Jo and all the amazing people who responded. Your answers made a difference to me and will make a difference to others not feeling so alone and misunderstood.
"I wish more people understood the relentless and isolation of ME and how utterly exhausting it is living with it every, single, day. Imagine spending the majority of your life in bed, alone, in the dark…" ~ Fern Roberts, 37, Norfolk, UK (she/her) #MEawarenessWeekpic.twitter.com/W6ooJQXiGW
— A Journey Through the Fog (@JourneyFog) May 15, 2020
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.
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.
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.
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.
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.
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.
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 –
