A wedge pillow is hot, weighty and awkward- so on bad days, the effort of picking it up and moving it around could be too much, and also I am pretty heat intolerant so wanted something that could breathe more.

I have made about six different version of this, including ones that don’t automatically rise.

I have also been hit on the head by those, because then there is nothing holding them up.

There is also one that is more adjustable as you work out what suits you.

I’ve put together a four page diagram of how to build your own. Simple or adjustable.

I tried using commercial gas struts instead of springs to push it up but most are designed to move through smaller angles than are needed.

The post BedRest first appeared on inVisibilit.ME.

Or when you the hit the road/internet/information superhighway, this rubber protects my poor toes/hands/wrists… I think I killed the metaphor.

Or brutally murdered it?

Mice

I have a lot of rodents running around my room. No George, don’t get excited, mice, not Ferrets, though occasional rabbits if Spike is misbehaving :S

No standard mice at all though, they are all very well Trained and perform many Tricks!

Ergonomic mouse

Vertical Mice

Can make a huge difference.

They provide a more natural position for your hand, and are much more comfortable to use if you have carpal tunnel syndrome.

Officeworks has a pretty decent one for just $20, but for a power user the MX Vertical is the one mouse to rule them all.

It also has Bluetooth, and supports connection to three computers simultaneously, and if you shop around, you can get it for under $100.

I have recently been trying one of these too – but be careful where you buy from – I got this for $400 less from a different seller on Amazon! You can return it in less than 30 days if it doesn’t suit you.

Ergonomic mousepads

Make a little difference.

You get a free one with the Logitech MX Vertical, and they are built into most of Rollermouse models.

And I do use one trackpad quite regularly too, so next…

Keyboards

Media Keyboards

Moving to Keyboards, and well trackpads – I often use a media keyboard balanced in my lap.

You can find this $19 cheaper at MWave.com.au

This is my current one, and from Microsoft!

‘Normal’ Keyboards

This is my favourite keyboard though – Logitech MX Keys. It also supports three devices (without a KVM), and is backlit. I don’t love the way the backlighting works, as I often use it at an angle closer to 30deg from horizontal as opposed to say 80 degrees.

It has some other cool functions too, particularly when used with a compatible Logitech mouse, such as switching between computers as mouse moves to different screen, even allowing u to drag files at the same time-even to a Mac.

The post Gear 4 ME first appeared on inVisibilit.ME.

“Anybody can become angry —
that is easy, but to be angry with the right person and to the right degree
and at the right time and for the right purpose, and in the right way —
that is not within everybody’s power and is not easy.”

― Aristotle

“Anger is just anger. It isn’t good. It isn’t bad. It just is. What you do with it is what matters. It’s like anything else. You can use it to build or to destroy. You just have to make the choice.”

“Constructive anger,” she said, her voice dripping sarcasm.

Also known as passion,” I said quietly. “Passion has overthrown tyrants and freed prisoners and slaves. Passion has brought justice where there was savagery. Passion has created freedom where there was nothing but fear. Passion has helped souls rise from the ashes of their horrible lives and build something better, stronger, more beautiful.”

― Jim Butcher, White Night

“Bitterness is like cancer. It eats upon the host. But anger is like fire. It burns it all clean.”

― Maya Angelou

“Usually when people are sad, they don’t do anything. They just cry over their condition. But when they get angry, they bring about a change.”

― Malcolm X

“Anger is like flowing water; there’s nothing wrong with it as long as you let it flow. Hate is like stagnant water; anger that you denied yourself the freedom to feel, the freedom to flow; water that you gathered in one place and left to forget. Stagnant water becomes dirty, stinky, disease-ridden, poisonous, deadly; that is your hate. On flowing water travels little paper boats; paper boats of forgiveness. Allow yourself to feel anger, allow your waters to flow, along with all the paper boats of forgiveness. Be human.”

― C. JoyBell C.

“The truth will set you free, but first it will piss you off.”

Joe Klaas, Twelve Steps to Happiness

The post Anger, my Favourite emotion! first appeared on inVisibilit.ME.

I had to try and stop it.

As Group Administrators, you had a responsibility to stop it.

You enabled a fully able man with dual income (and three working age sons) give away the few last possessions of a disabled pensioner, unable to work, with a life expecancy of more than thirty years less than average.

Actually it got worse than that, in the last year. Enduring what he put me through in the last year, I went from a lifelong history of low blood pressure, to not just high blood pressure, but severe idiopathic CHF (Congestive Heart Failure) with a LVEF of less than 23%.

Just being diagnosed with normal CHF gives you only a 50% chance of being alive in five years, 20% in ten years.

Harm Minimisation

The presumption of innocence is enshrined in judicial law.

Except in the practice of law peace officers act to protect the aggreived party, not the aggressor.

The system by default acts to protect without full knowledge of the veracity of facts, to protect people at risk of harm.

The default action of the Admins when told an illegal act is being carried out should be similar, to minimise harm.

Disabilities

I haven’t brought it up yet, but I am a person with a number of disabilities including ME, which is basically Long Covid+ for sixteen years, and have been seeking supported accommodation through NDIS.

The Blue/Green diagrams rate severity.

I have also been on the accelerated list for Housing for more than a year.

I thought my brother was allowing me to stay until those wheels of NDIS turned.

My brother wanted me out of his garage so he could go to Tasmania on Long Service Leave, without a little niggle in his mind.

So he leveraged his privilege, and used the law to ‘protect his family’ and his garage and had me thrown out, using the police with 15 minutes to collect my belongings.

The were no facts or proof involved, in fact the supplied document was full of incorrect and misleading statements. That is being rather generous, actually.

Except when I call the police about something like this, they look at that document. They become much less helpful.

When I apply for NDIS housing, went for an walk through, go to the interview and I mention this… Things change.

I have been trying to stick to vigorous honesty for quite a while now, which does make things difficult.

So I live in a homeless shelter.

Responsibility

Many other things are removed from the group for much more minor reasons. By letting this continue you become part of the illegal action.

Not Just like onlookers witnessing police brutality, but as Admins you are like Police Sergeants watching overzealous subordinates go too far and saying nothing. By saying nothing you are tacitly approving.

I have so little left. I’m living in a homeless shelter, and now I don’t even have the spare linen to change my sheets and pillow-cases.

Except I can’t change my own sheets, I need a support worker to do that for me.

Most pwME (people with ME) are more profoundly disabled than people with pwMS (we used to be called Atypical MS before 1960), but through the vagaries of NDIS most of us don’t get any funding, so we cant afford new accessible devices or specialised furniture.

Proof

I actually proof of ownership for much of it.

Except you should really have acted without proof, to protect person who stood to lose more.

I have photos of much of it from a few months ago to many years ago, including me wearing the clothes from 2007 and before. I also have receipts for many items.

Emotional stress has just as big an effect on my body as physical exertion, to create neurotoxins that swirl around my bloodstream, and brain.

Looking at the PEM (Post Exertional Malaise) and Neurocognitive images above should give you an idea of my capability to provide them to you in a timely and coherent manner yesterday.

That is a few reasons why acting to protect should be at the top of your priorties before asking for proof.

The desk chair was specifically modified by me, for someone. A lot of the other ergonomic/monitor stands stuff were for other people, when I could access them again. Because we don’t get NDIS funding we go without or make-shift mods, and I was hoping to bridge the gap a little.

I’m also on the spectrum, and have many issues that things in that garage helped with, such as being too hot due to both ASD and M.E, which is why meeded just one of my portable air-cons some more of my lightweight, and yes, more expensive clothing.

Memories

It is mixed with guilt because I wasn’t home after being invited out by a woman to a dating event. My cat was very social, and I would normally lock her in at night, but she didn’t come back in time. She occasionally visited cat friendly neighbours across a street, and they saw her get hit and called me.

It was also, and this is going to sound even more ridiculous, but the ‘Hays’ mentioned in the “green me photo” was my girlfriend who died of cancer, and yes, she liked the shirt too.

The purple jacket was bought on my last international trip to Hong Kong in better, healthier days. Some of the watches are from that trip too.

Ah to have a disposable income, let alone a dual income like my brother. And now in the year all his boys have finished high school and are earning real money he has given away the few possessions I had left.

There were many happy memories from my marriage too, left among my belongings. I wasn’t too precious about the wedding album, but other things were more meaningful to me.

“I have my Books and Poetry to Protect Me”

Well, not any more.

They were always the world I escaped into when bullied by other children, when I got sick, now, the last 5% of my collection, gone.

Also there were my journals, and I am obviously the somewhat introspective type. I don’t revisit them all that often, but I valued them and their content.

Also some other treasured books including first editions, special orders, and my complete set of Griffin and Sabine.

There are six books in the complete series, as well as some other books by the same author.

Not so much novels as paper based multimedia experiences.

All in mint condition, with no missing inclusions.

C’est la vie.

Yes some things were to resell, and they and many others I don’t miss so much.

These are just some of the items and memories that are gone.

And most of my winter clothing.

1 tiny tragic tryptych
2 snowball’s gonna do
3 Love, Loss, Longing

The post t3 Love, Loss, Longing first appeared on inVisibilit.ME.

First Message 11am

“Hi xyz, sorry to involve you in this… but, needs must, and well…

The listing my brother Jason Forhim, posted on Buy Nothing for a “free garage sale” is illegal, he does not own the goods, and he has prevented me or other people from collecting them.

They are quite substantial and obviously worth more than $500 which means he is breaking the law in a number of ways.

I was actually at the Magistrates Courts just a couple of weeks ago about this, and the Deputy Registrar told me they were informed my goods were desired and he could not break the law around them, or dispose of them illegally.”

Reply

Dear Drew

Thank you for reaching out and getting in touch with us about this.

It does seem to be a very complex issue and must be very distressing for you and we’re not 100% sure how to proceed.

It is against the Buy Nothing rules to offer anything illegal, however the legality around this items seems to be more an issue of ownership, which we as Admins are in no position to judge/determine and we always make the assumption that people are giving away items that they do own, it’s one of the rules of joining a Buy Nothing group which members agree to when applying, that you give from your own abundance.

The best suggestions I can offer you due to our inability to determine if the gifting is illegal or not is to go to the police as they have a greater capacity to determine if the activity is legal or not. Failing that I’d suggest you get someone to go to the free garage sale and collect items on your behalf.

For your information the post says anything left will be going to the Green Shed tomorrow.

Sorry we can’t be of further assistance at this time. We wish you all the beat with getting this matter resolved

xyz and the Buy Nothing pqrx admin team

More info from me:

Hey, I just added a little more as I informed other admins.

I have already called the police, and they are not allowed to act yet because it is apparently a civil matter,
and I have to approach ACAT on Monday, which will obviously be too late.

The only legal way for him to dispose of any property greater than $500 is by public auction, giving me and the public three months notice, and holding the money in trust until I collect it. He is allowed to keep a small component of any profits as compensation for storing the good in between.

My snowboard alone is worth more than $500, let alone my other snow gear, two portable Air-Cons, Dyson vacuum, dual-door fridge with icemaker etc.

They are breaking ACT Law, relevant acts:
1996-86, R17, Part 3, 18-19, 21, 24-25, and 30. Uncollected Goods Act.

By doing it this way they are making the Buy Nothing group a party to this illegal act too.

Could you please take the post down?

13:13

Unfortunately we have no way to determine who owns the items.

Our base assumption is always that the gifter does own the items as they’ve agreed to the group rules.

As I already explained we are not in the position to determine who owns the items and as such have no basis for which to remove the post.

We understand that this is a difficult situation, and feel if the police are unable to act, then we are really not in a position to take any action about it. We are just volunteer admins of a community group.

Quite interesting that I had saved that quote just the night before…

1 tiny tragic tryptych
2 snowball’s gonna do
3 Love, Loss, Longing

The post t2 snowball’s gonna do first appeared on inVisibilit.ME.

This morning I was about to make some phone calls while making some bookmarks.

Then I got a message on FaceBook, “Is this yours?”

Is this yours?

“3 m · Garage (sale) but everything is free! Today 8 Jan. 10:30am Chisholm.

Free Garage sale in Chisholm. 10:30am. Private message me for address.

Huge array of items including, but not limited to: bike parts, torches, soft toys, plumbing goods, sheets and pillow cases, furniture, clothing, suits, computer keyboards, snow pants, snow gloves, snow goggles, platters, tennis racquets, sports protection gear, backpacks, DVDs, dog harness, multi core cables, plates, towels, neck cushions, lights, handlebars, coat hangers, jackets, baby photo albums, mobility equipment, lunch boxes, containers, money boxes, pulley system, lap top bags, watches, phone cases, garden misting kits, bike clip on shoes, door handles, cushions, kitchen measuring items, easy cast, can openers, Tupperware, caps, computer monitor stands, crane bike trackers, flexible baking trays, BMW CD changer, DVD players, calculator, suitcases, computer stands, rain jacket, tubing, toys, Mr Men books, pedals for video games, wine cooler, flags, Game of thrones board games, headsets, book ends, kitchen utensils, office chair, ergonomic desk modification, craft supplies, multi towel towel rack, plastic boxes, kitchen knife block. AND MUCH MUCH MORE!

It will go to green shed tomorrow.”

It was from a member of a BuyNothing group I used to be in, and my brother still is.

I love that I got it 3 minutes after it was advertised, from a friend in the group.

Yes, that is all that is left of my lifelong possessions.

And the last fraction of the books I used to own.

Stop That Snowball!

I called the Police. They said it is a civil matter and that I need to call ACAT, on Monday.

That will be two days too late.

I had previously had contact with four of the five group admins.

I tried calling all four via FB to ask them to remove the post, but none picked up.

So I started writing messages. One of them did respond, but nothing doing.

2 The snowball was well and truly in motion.

The second reply was at 1:13pm, putting the onus on me to prove ownership.

3 Love, Loss, Longing

Now my lag time of Three minutes after the original post at 10:30am had stretched out to Three Hours.

I had lost the race. A drag race, and me, my memories, my plans were being dragged behind the car like a misfired brake ‘chute.

All my best possessions and memories would be picked over by multitudes, and long gone.

I started replying, but being stressed, I lost my first effort in Messenger, then started typing elsewhere, in case…

Huh, I’m all three of those last ones. Welcome to the shadowlands.

I hadn’t told them I was. That is not their business.

They were facilitating the law being broken. That is.

Well, continue, and you will see…

1 tiny tragic tryptych
2 snowball’s gonna do
3 Love, Loss, Longing

The post t1 a tiny tragic tryptych first appeared on inVisibilit.ME.

Are you handy with tools and want to help someone in need?

We can probably hook you up with someone who could use a couple of hours of your time.

We got Needz.

Most people with ME have specialised needs, just to use a computer.

Many people in Australia have trouble getting the DSP, let alone NDIS. There are only twenty, yes 20, specialists in ME in Australia.

We could use some simple handyman innovations to make life easier.

Life Hacks

Some are simple, like just adding bias lighting to monitors and TV’s dramatically reduces eye strain, which for someone with ME is very important.

Some people with ME might need help just sticking the led strips to the back of their screens.*

Work in Bed

Us, not you

Most have to use computers in their beds, but even that is tiring.

I’ve come up with some simple hacks to make it easier, cheaply.

Some people can sit at a desk for a while, if they have a chair that supports their necks + head. Maybe their legs too.

I custom built this one… from chairs I bought 2nd hand at the Green Shed, in Canberra.

Replacement cost would be something like this:

But I think my combo is better!

One Size fits Most?

I’m not proposing a one-size fits all anything.

Probably each person might want something a little different.

I built my laptop tray from a kitchen shelf slider, and because I feel the heat a lot, it has, ahem, hidden features.

Six silent running server fans!

Design is a Process

As one of my teachers used to say.

The first go at a solution may need to be modified.

I realised later, with my laptop tray I should not have just remounted it, but demounted and rotated the rollers.

I will soon!

* And apparently I am one of those people who need help. I didn’t intend to leave it there, so just strung it around, and then it fell, so of course Spike needed to inspect this moving light.

Yes I obviously need help clearing my desk of active projects, but putting this site together has been a bit of a rush.

I am not the best at putting my needs in front of others, or at least ideas for others.

The post Build 4 ME first appeared on inVisibilit.ME.

There are some things to make it easier, and let us be comfortable longer, in a chair or bed.

Location, Location, Location

Desk

Supportive Chair

Most chairs don’t go back this far, but leaning back with head support makes a desk far more bearable.

This is based on a chair from AKRacing, with heavy mods.

Ergonomic mouse

Vertical Mice

Can make a huge difference.

They provide a more natural position for your hand, and are much more comfortable to use if you have carpal tunnel syndrome .

Officeworks has a pretty decent one for just $20.

I might also have the Logitech one, but if you shop around, you can get it for under $100.

It also has Bluetooth, and supports connection to three computers simultaneously!

(but not to an old Mac mini via Bluetooth)

Finding one for a lefty is harder, but Contour make some amazing mice. I haven’t tried one of their fully adjustable vertical mice.

They have a Nordic/Dansk vibe for my fellow aesthetes out there, as well as a 30-day money back guarantee. Which is good, because some of their models, yow.

I have ordered some of their dual handed ones (Thank you NDIS), in the hope of finding the best solution for my wrists. Be careful not to order when in Brain Fog though, as some of the suppliers on Amazon charge literally three times as much for the same product.

Ergonomic mousepads

Make a little difference.

You get a free one with the Logitech MX Vertical

Eyes

My eyes are the first thing to get tired, and there are some easy ways to be more gentle on them.

Reduce Brightness

On your monitor, reducing/playing with brightness + contrast settings can help many people.

Indirect Lighting

Sitting in the dark might seem ideal but it’s actually easier on your eyes to have indirect lighting

Bias Lighting

is even better. It is really easy to do, and although most gamers do it to look cool, it is much gentler for your eyes.

LED strips can be stuck or hung to the back of your monitor.

Fun in Bed

Not that sort… but here are some ‘Structural changes’ to and around my bed to make it more adaptive. And a little more

The post Compute 4 ME first appeared on inVisibilit.ME.

Need some Specs?

We have lived with our disabilities a lot longer than you have experienced our problems with your own set of rose-tinted spectacles.

I’m not trying to be judgemental here, just factual.

I have my own pair of distorted lenses every time I open my eyes.

In fact I think I own a number of different spectacles, each with different shades & properties.

I sometimes try to wear more than one pair at once, and just like two polarising lenses at 90 degrees, combinations of my lenses can block all light and understanding.

See ME, Hear ME

People with invisible disabilities have different problems.

When we ask for something, there is probably a good reason, it’s not some whim.

Most of us are used to not being seen, being heard, or even believed.

You have a right to believe looking at the sun is healthy, but that doesn’t give you the right to deny us sunglasses.

If we ask for something, it is probably important.

Do we know better than you?

Possibly not.

Do we deserve a chance to find out for ourselves? Absolutely.

How about you throw your next three meals in the garbage without eating them?

Do you like being told to do that? Do you see the point behind it? Can you do it?

Some of the things we are told that we need to do as disabled people seem equally pointless, in fact more so, because we’ve already done many of them, over and over.

Just because you think it is a novel approach does not make it a pretty snowflake.

Needs

Maslow, a psychologist last century proposed that people are motivated to achieve certain needs and that some needs are more important to achieve first.

Our most basic need is for physical survival, and this will be the first thing that motivates our behaviour. Once that level is fulfilled the next level up is what motivates us, and so on.

5.
4.

3. then build up

2. a very good place to start

1. Start at the very beginning…

1. Physiological needs 

Are needed for human survival, e.g. air, food, drink, shelter, clothing, warmth, sex, sleep.

The human body cannot function optimally without these. Maslow considered physiological needs the most important as all the other needs become secondary until these needs are met.

2. Safety needs

Then people want to experience order, predictability and control in their lives.

Emotional security, financial security, law and order, freedom from fear, social stability, property, health and wellbeing.

3. Social needs

Next we need a sense of belonging. Interpersonal relationships, affiliation, connectedness.

Friendship, intimacy, trust, and acceptance, receiving and giving affection, and love.

4. Esteem needs 

Build us up:- self-worth, accomplishment, respect. Two types:

(i) esteem for oneself (dignity, achievement, mastery, independence) +
(ii) the desire for reputation or respect from others (e.g., status, prestige).

Maslow thought the need for respect or reputation is most important for children and adolescents and precedes real self-esteem or dignity.

5. Self-actualization needs

The good stuff, come last, reaching one’s potential, self-fulfilment, seeking personal growth and peak experiences. To become the most that one can be.

People all the time expect others (and themselves) to achieve this, without encouraging or enabling the more important fundamental needs first.

Expect More

I bet if every fundamentalist protesting outside abortion clinics, offered to give each pregnant woman they talked to, 5% of their yearly income, they would stop a lot more abortions.

Tithing is in the Bible right? Why not just give 5% to the church, and 5% to saving a life already in front of you? Most churches don’t need the money as much as young single mothers on a minimum wage.

Yet these are often the same people so against having a decent minimum wage.

If churches sponsored under-privileged women, and provided free child care while single mothers went to work, instead of organising protests condemning women in dire straits, that would also be a better, more loving way to reduce the number of abortions.

If it is really about saving souls, I imagine many such women would not even need much encouragement to attend church, many would feel almost obligated.

Save the unborn child, and save the souls of the mother and her children.

Fifteen years of childcare + after school care is a much bigger commitment than one morning of righteous indignation; bullying someone who does not have what you have.

The young expectant mothers really deserve to expect more.

Flies and honey, or vinegar.

We Deserve Better

People often expect others to be better than themselves.

Particularly people who are often better off socially and financially.

They want us to live at their Level Five standards, but they are unwilling to do anything to raise our standard of living.

In fact many actively discriminate against others.

The Basics

I think most healthy people who read this probably have almost 100% of their basic needs, Level 1 + 2 being met.

I like to think I had almost 100% of the first four levels before I got physically sick.

Today, I often feel fear about, or just plain don’t have, many of the basics.

People seem to demand the best of us, while continuing to ignore our basic needs, like a light so I can see the impeded path to the toilet.

Progress not Perfection

Maslow did not equate self-actualization with perfection.

Self-actualization merely involves achieving one’s potential.

Someone can be silly, wasteful, vain and impolite, and still self-actualize.

Maslow thought less than two percent of the population achieve it.

I am far from perfect. I have deep wounds in my body + soul, and I don’t always act from the purest motivations.

I do feel quite at peace with myself and my God, not so much my family.

Rise UP

We deserve more.

Many people choose to judge others, without trying to understand first.

My family does not seem to believe in my illness, or the research, + just want to blame me for not being able to live the life they seem to beLIEve I can.

If people choose not to believe us, or our needs, that is not our fault.

Your disbelief is your dysfunction and your disability, not my responsibility.

The facts + research are out there. Trust science, not your preconception.

So

What about M.E.?

I’m on the Autism Spectrum, have ADHD, chronic anxiety + depression.

In 2005 I probably wasn’t as close to 100% on the lower four as I believed.

In 2006 I got Glandular Fever, or Mono as the Americans like to call it.

Since then, I have been diagnosed with Myalgic Encephalomyelitis, and have been unable to work full-time.

Or do any exercise above walking, or the gentlest/flattest of bike rides on anything but an electric bike.

I used to love Mountain Biking. But today, even if I had a fully electric mountain bike or a motorcycle, just the physical control of it off-road, would be beyond me.

Twenty years ago some psychologists ran an experiment so flawed it is used as an example how not to run a scientific study, but many Doctors have not read any of the research or changed guidelines since, and think ME/CFS is psychosomatic.

GET + CBT make people with ME worse, as do unrealistic expectations.

Don’t trust my words? Listen to the experts.

What is ME? 

Sources

Much of my Maslow stuff was sourced from here. If you want more, or even just a better understanding of it, than my interpretation, through my lenses read on, lots of info out there.

The post Needs + ME first appeared on inVisibilit.ME.

Illustrating this artwork for ME/CFS advocacy was a struggle for me this year. Partly due to my physical and cognitive limitations of not being able to sit upright (even in bed) and concentrate for long. The other barrier was emotional. It has taken me many weeks to illustrate, then articulate words to accompany this image, all while my inner monologue argued why I should or shouldn’t share something so raw at this time.

The ME You Don’t See

We’re in unusual times where we need happy distractions, not dark, depressing images. Surely this would be too negative a topic to illustrate or write about? – my inner monologue began. Perhaps it wouldn’t be good for my mental health. Or anyone’s mental health. Maybe I should just skip advocating for May 12 International Awareness Day for ME/CFS and Fibromyalgia this year.

Everyone’s in lockdown, in social isolation and are suffering from the anxiety of the unknown. The whole world has practically stopped! Some of you are worried about finding another job, others are worried about vulnerable loved ones catching COVID-19, or your school-aged children falling behind in their studies, or you might feel sadness for missing out on that planned family trip or your close friend’s wedding.

Surely I can’t add another burden on people during this time? But what about all the others out there who are worse off than us? – the battle of my inner monologue continued – What about those who have been isolating in their homes for years, while life continued as normal outside their windows?

What about the young and talented photographer Whitney Dafoe? Will he finally unpack his camera and enjoy capturing the natural outdoors again? Or even walk, eat or speak again?

It was only a few days ago Whitney found out there’s a serious global pandemic happening outside his darkened room. That’s how isolated he is from the world.

There are #MillionsMissing out on life due to this devastating disease.

Imagine if you were the only person you knew in lockdown while the whole world remained open and life continued on without you. You’re excluded from your family and friends on a daily basis. Now imagine on top of this, you are feeling incredibly ill, so ill, you can’t bear noise, light, touch or stimulation of any kind.

You would love to pass your time with exercise, baking, reading books, favourite hobbies, chatting with friends and family on the phone or video-link, but all are intolerable to you.

Imagine not only being trapped inside your home, but inside your broken body, year after year, watching your life pass by, knowing restrictions aren’t going to be lifted in the foreseeable future as there’s no glimpse of a cure or effective treatment on the horizon.

It wasn’t until I had completed this artwork that I realised the real reason why it was so hard for me to illustrate.

I didn’t want to make others feel uncomfortable by sharing my reality.

This illustration is so raw, it even makes me feel uncomfortable. Probably because it’s a more realistic representation of how I feel most mornings during the first few hours – or during the day, after I’ve unloaded the dishwasher and chopped a plate of fruit – or in the evenings, after I’ve washed my thin shoulder-length hair (using a shower stool).

The ME You Don’t See

I’ve been effectively in quarantine for two years since my illness went from five years of mild-moderate symptoms to moderate with severe patches from April 2018.

Buried under the weight of concrete, lactic acid burning throughout my body and an inferno swelling within my brain and upper spinal cord. Some mornings, I feel like my skull will shatter from the internal pressure.

I usually improve little by little as the day goes on – so long as I carefully pace my minor daily activities with intense resting in between – but the hell starts all over again the next morning, no matter what I do.

Why is it we don’t want to share this uncomfortable truth and don’t want to burden others with stories of our suffering?

Is it because we’re so used to reading motivational stories from those who have overcome their disability or serious illness or injury, that we’re afraid of sounding negative or not trying hard enough? I mean, who doesn’t love ‘inspiration porn’? It gives us hope. I want to believe I’m going to wake up next week, next month or next year and be better, even though this would be 95% improbable.

ME patients (who meet the ICC or CCC diagnostic criteria) have a rather poor prognosis especially once they’ve reached the 5 year mark, with only a 5% chance of full remission. Severe ME patients can’t be compared with ‘healthier’ disabled groups or even those with milder forms of Chronic Fatigue Syndrome (diagnosed using broader criteria).

Severe ME patients are disabled, because they’re sick, really sick. The quality of life for people with Severe ME is comparable to the final days/weeks of end stage Cancer or AIDS. While ME can be terminal, it’s more likely patients with severe ME will endure balancing on the edge of death, day after day, year – after – year.

ME is the most common of all major diseases with 20-30 million worldwide and up to 250,000 Australians, yet is the most underfunded and understudied.

There are currently no effective treatments to even give some quality of life for ME patients.

I think part of the reason for this lack of interest and funding is due to ME/CFS being misunderstood for its invisibility and the unfortunate wording ‘chronic fatigue’.

We don’t appear sick when we’re able to leave the house. If we do manage to visit the doctor or go for a short outing, it’s because we’re having a good day and of course we look well. And being commonly known as ‘Chronic Fatigue Syndrome’ even medical professionals have the misconception that we’re just a bit tired or burnt out.

However, the exertion from leaving the house – just for an hour or two – is enough to put us back in bed for days, weeks or even months! This hallmark phenomenon called Post-Exertional Malaise (PEM) is a combination of symptoms worsened by the dysfunction of multiple body systems after even minor physical or cognitive effort. This is the most debilitating part of this illness and the doctors and the community never see it.

I had to illustrate what people don’t see. The truth. The reality of this disease.

ME doesn’t discriminate – it can happen to anyone, young or old. It usually starts after contracting a common virus.

I’ll say that again… 

It can happen to ANYONE, YOUNG or OLD – and it usually starts after contracting a common virus.

If knowing this – while there’s a viral pandemic on the loose (a novel coronavirus that scientists are yet to fully understand) doesn’t make you feel uncomfortable – it should!

Scientists have discovered COVID-19 can enter the central nervous system and may cause long-term or permanent damage to various other body systems. Infectious disease and ME/CFS experts are bracing for a new wave of ME and other Post-Viral related illnesses from 2020.

For this reason, advocating for Myalgic Encephalomyelitis and Chronic Fatigue Syndrome is even more important this year than ever.

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Watch the following FREE videos

What is ME? short overview

ME and PEM a short video explains what people don’t see

After Unrest an Australian documentary.

A short story of Dr Ron Davis’ race to save his son Whitney from dying from this disease.

Voices from the Shadows a 30 minute trailer

The full documentary Voices from the Shadows is available for free. First, click URL below, join up with Vimeo if you haven’t already (it’s free) – then select ‘rent’ and enter promo code VOICES to watch full documentary for free: https://vimeo.com/ondemand/22513/108797012

Watch Unrest, an Award Winning Documentary
Jennifer Brea is about to marry the love of her life when she’s struck down by a fever that leaves her bedridden. When doctors tell her “it’s all in her head,” she turns the camera on herself and her community as she looks for answers and fights for a cure.

https://www.youtube.com/embed/JvK5s9BNLzA?feature=player_embedded
Unrest is now streaming in Australia on Netflix, Vimeo On Demand and Apple iTunes.
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Also published on Medium

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Amanda Francey

Writer and Illustrator

Amanda’s childrens’ book illustration career was rudely interrupted by Myalgic Encephalomyelitis and the usual co-morbid suspects.

My M.E. story

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