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.