#m.e

[chronicallyuniconic]

I feel guilty because to them it's "only" chronic pain & fatigue.

It's not life threatening, even though it can get there.

It's not really treatable, just sit-withable.

It's not something like cancer, that can be cut or irradiated out of you.

It's not like I have to do anything other than sleep & try to cope with the pain levels.

I feel guilty because my illness isn't seen as valid as others.

I feel guilty because funding is so minimal and research so sparse, i am only able to lay in bed.

I feel guilty because my illness isn't seen as worth caring about and by extension, me.

I feel guilty about their positive outlook when I used to have that too, but they're getting treatment unlike me.

I feel guilty for having bad and worse-than-bad days, when I used to fully function like my friends and family.

I feel guilty because nobody gives a damn about M.E

#does this make sense

[ricciardoe]

JAPANESE GRAND PRIX 2022 — by CLIVE ROSE

[mindfogandsleep]

Sharing this with permission from @chaisorrowscfs on Instagram. I LOVE this idea and wanted to share it with more people.

[magiclovingdragon]

First time out in public with my new crutches and I’ve had not one but 2 people physically assault me in aldi, one person rammed their trolley into my crutches because I was apparently in the way while I was stood off to the side & there were two trolleys blocking the aisle & the other kicked a crutch out from under me then when I started to fall, shoved my back…

I was already having a really bad day and I did NOT need this

[maghrabiyya]

Having M.E is wild because some days you think you're more or less okay, then you do some miniscule activity like move a book case a few inches

Then the next day you're slurring your words and can't lift your arms or head and keep falling asleep

[cenobittten]

There's a lot floating around about new trial graded exercise 'treatments' for M.E and Long Covid floating around again. History is repeating itself.

Time after time, those in the chronic illness community have spoken about the harm 'pushing through' pain and fatigue can do to a sufferer of Post Exertional Malaise.

Yet, rather than being guided by mounting biomedical research that shows there is a biological reason behind these symptoms, medical practitioners are still holding on to the 'sufferers are just deconditioned' narrative.

Post-Exertional Malaise causes a sufferer a real disproportionate blowback if a sufferer goes 'past their limits'. This can not only create an increase in fatigue and symptoms in the short term - often for days after - it can permanently reduce your capabilities in the long term. The chronic illness community is packed full of horror stories about individuals who have taken part in exercise-based treatments (formal or informal) and have made themselves so sick, they are housebound and/or unable to take care of themselves. The worst affected are unable to get out of bed.

If you are still feeling fatigued after Covid or any other bout of illness, don't get persuaded into 'exercising to health'. Follow the advice of the chronic illness community and practice 'radical rest'. Break longer activities into manageable chunks and avoid exercising to exhaustion.

When I became chronically ill, I found this guide absolutely invaluable.

As COVID continues to make the rounds, I fear more will need this advice as time goes on :/

[cathrynworrell]

5 obvious mistakes artists with a chronic illness should avoid during Inktober

As someone who’s lived with ME/CFS for 18 years, I’d like to be able to say how well I manage, or pace, my day-to-day activities. However, if I were going to be charitable, I’d say there’s room for improvement there.

What is pacing?

Pacing therapy is a way of balancing periods of rest with periods of physical and mental activity in such a way that you avoid doing more than you’re able to and, therefore, avoid triggering a relapse of your worst symptoms that may take days or weeks to recover from.

Ideally, you keep things moving at a gentle, steady rate, stopping frequently for breaks and not pushing beyond your limits. And that applies even on days when you might feel you could do more, because that could impact on what you’re able to do the following day.

It’s a tricky thing to get right and as human beings, the ‘baseline’ of energy for someone with ME can change over time just to make things more complicated.

If you can master this way of balancing ‘doing’ and ‘resting’ it can also be a really helpful approach to things like making art, especially for daily art challenges like Inktober.

What is Inktober?

For those who aren’t in the know, Inktober is a popular annual art challenge where artists create work with ink during October. They might do this every day or whenever they can, and they might share it on Instagram too.

I’d say that the ideal Inktober approach is to create a drawing each day that is small and/or doesn’t take more than 20 minutes. That way, you can build momentum without the challenge becoming tedious, tiring or too time-consuming for you to continue with.

Can you see the link here between pacing and Inktober? A small amount each day, maybe less than you think you can manage and that way, you can keep going. Gently, steadily.

So, in spite of the impression I seem to have given to a few friends, my approach to pacing my health is hit-and-miss. I tend to overdo things, leaving me depleted for days (or months sometimes) afterwards. And this seems to have spilled over into my creative practice too. I was comforted recently when someone described my tendency to do too much on some days as ‘very human’.

Based on my own ‘human’ mistakes, here are 5 things any artist with a chronic illness like ME/CFS should avoid doing during Inktober.

1. Trying to get a ‘head start’ with your drawings

In September, I started planning my Inktober drawings. I found some prompts that I liked the look of and felt quite excited. But then my internal monkey brain piped up, suggesting that I could start Inktober early and get ‘ahead’.

I mean, that’s not necessarily a terrible idea, but when you let yourself run too far with that, the drawing challenge is no longer enjoyable and starts becoming work or even a chore. It feels like you’re trying to blast through your homework so you can hand it in 2 weeks early instead of taking your time to do your best.

Remember, Inktober is supposed to be fun. You’re making drawings, not performing heart surgery, so just go with the flow. Start when you can and make as many drawings as you want or feel able to.

2. Making more than 1 drawing a day

This is a bit like pacing your energy when you have a chronic illness. You might have days when you feel like you could do more than you’d planned. You could knock out 5 drawings today and again get ‘ahead’ so you can put your feet up for a few days before starting again.

There are 2 things I’d say about this

Making 5 drawings every few days is more likely to leave you feeling like Inktober’s a chore, something to ‘get done’. And after making those 5 drawings, you’re more likely to have dampened your enthusiasm for it.

If you make 5 drawings in 1 day and then no drawings for the next few days, when you next start, you’ll have to try and get back into the swing of the habit. If you do a little every day, something manageable, the momentum will build. This doesn’t mean you’ll work faster or be more prolific, but it will be easier because it’s becoming part of your daily rhythm.

3. Using art materials you’re less comfortable with

This might feel like a great time to experiment with those bottles of acrylic ink that have been sitting on your shelves for the past few months. And maybe it is, which is great but don’t use these new materials as a way to make Inktober harder for yourself.

If you’re trying to make this a habit that creates as little friction as possible in your day, make getting started as easy as possible.

Create a space where you can leave your inks and brushes out without having to do too much cleaning up each day. Or better yet, choose your favourite pen and use that. You know you like it. It’s comfortable to use, and you already have some confidence drawing with it.

Keep in mind this quote I once heard, which I believe is from Tim Ferriss: ‘What would this look like if it were easy?’

4. Expecting a perfect drawing every day

I can relate to the fantasy of imagining a perfect set of inked drawings at the end of October. Every single one a piece of art that you’re proud to share and that everyone will be impressed by.

But you know what? Trying to achieve that is just being hard on yourself. Kind of mean, actually. Like you’re telling yourself that unless every single drawing is something you’d want to frame and hang on your wall, then you’ve failed.

Let’s face it, living with a chronic illness is hard enough. Life’s hard enough full stop, whether you have a chronic illness or not. None of us need this unnecessary extra layer of self-imposed pressure.

Go easy on yourself. Again, this is supposed to be fun. Be curious, play and allow yourself to make 31 rubbish drawings. Maybe you’ll surprise yourself and like a couple of them.

5. Forcing yourself to make 31 drawings

If you can build some gentle momentum in Inktober, maybe you’ll make a drawing every day, which would be nice. But if there are some days you just don’t have the energy or brain power for it, then that’s OK.

Join in if you want, when you want, and when you can, but don’t use Inktober as a stick to beat yourself with. Fun - remember?

No one gets it right all the time

So, like I said earlier, if you can master creating balance between ‘doing’ and resting, between drawing for Inktober and doing other stuff, then maybe you can create some gentle momentum that will see you through 31 days of drawing.

But, and it’s a big ‘but’, I have yet to meet anyone with ME/CFS who’s got pacing down to a fine art. Everyone I know overdoes things sometimes for all kinds of reasons. And sometimes, even without pushing ourselves, we can end up inexplicably drained some days and just need to stop.

It’s the same with Inktober. Maybe you can find the perfect pace to maintain a little bit of drawing every day for the whole month. But if not, that’s OK. You’ll get back to it when you can (and want to). What’s the worst that can happen? You make 1 drawing instead of 31. What’s so bad about that?

[minhailusaofavorita]

escrevendo para ele

Eu não espero que as pessoas lute por mim, mas ainda tenho a esperança de que elas poderiam ficar um pouco mais, eu nunca sei dizer adeus a nada, por mais que eu tente deixar algo ou alguém, esse nunca foi meu papel, eu dou mais chances aos outros do que a mim mesma. Eu não sei amar pela metade, sempre vou amar completamente e talvez seja por isso que quando tudo ser torna um ponto final doa mais em mim, eu já fui uma pessoa melhor, uma pessoa boa, mais quando meus sentimentos eram inocentes, depois que aprendemos a amar e de alguma forma sofremos, tudo muda, ou o coração se fecha um pouco mais, sobre o que tenho a dizer do amor, eu amei, amei uma pessoa que parecia ser meu mundo, amei perdidamente, amei mais ele do que a mim mesma, amei até quando não deveria amar, amei seus defeitos o aceitei em todos os seus erros, sobre as chances, ate quando não as tinha, dava um jeito de dá mais um pouco de tempo, e todos os tempos foram absolutamente perdidos. Ser há arrependimentos, em partes sim, mas não me arrependo, de nada feito, de nada dito, afinal, não a um jeito certo de amar alguém, eu amei do jeito mais lindo que alguém pode amar outra pessoa. Mas como tudo teve um fim.

- Minhailusãofavorita

[chronicallyuniconic]

If I were dead, that would really show them

How much pain constantly runs through my body

How heavy the fatigue sits inside my bones

How often I'm silent about the above

How i physically might look fine, but inside I'm crying, screaming, trapped underwater

How frequent I'm at the mercy of medical professionals that couldnt care about pain or fatigue

How i cannot push through pain and fatigue, it is always there and it will not stop

How scrambled my brain is from dealing with this, 24 hours a day, 7 days a week

How pain free I would be, if I weren't here

How I'd never experience this weight of fatigue, if I weren't here

How happy id feel if I weren't here

How free I'd finally be, free from me

[ricciardoe]

MONZA GRAND PRIX 2022 — by FLORENT GOODEN

[mindfogandsleep]

"I'm sorry you're still struggling with your health"

It's fucking chronic, Katherine

[saudade06]

For a while I've been unhappy but found some way to live through the pain. I found a way to seem happy and survive without giving it all away. But lately though there's been this lingering feeling deep down in my chest. I feel as though it's all pointless, like I'm in living in vein.

I've pleaded with my mind to stop the voices, I've begged and I've cried for it all to end and somehow for me to find joy again but nowhere in sight is there a new beginning, nowhere in sight is there a fresh start.

[phleb0tomist]

happy disability pride month to people whose main mobility aid is an adjustable bed

people who need to lie flat all the time

people who only sit up to eat or use the bathroom

people who are too unwell to be transported anywhere, even within their own home

people who structure their whole week around recovering from a single planned trip out of bed

people who are technically wheelchair users because they can’t walk, but can’t tolerate being upright for long enough to use a chair either

people who can’t adapt activities to be accesible, and instead have to just miss out on 90% of life

i see you and i respect you and love you. if you feel limited, confined, sick, or bound to your bed, i see you.

[aphantimes]

Examples of Knuckles sensing all forms of Chaos Energy (and other things?) so I can aggressively point here whenever people forget about it

I see this part of Knuckles' abilities forgotten way too often and it drives me insane so here

1: HE CAN SENSE THE MASTER EMERALD.

Very blatant. His entire gameplay in SA1 and SA2 revolves around this ability. He innately has the ability to sense the Master Emerald and its shards. Rouge meanwhile is given an Emerald Detector in SA2 to explain her gameplay.

2: HE CAN SENSE CHAOS CONTROLS.

He senses "some strange energy" right before Sonic Chaos Controls right in front of him. Essentially predicting a Chaos Control. IDK how else you could read this lmao he literally sensed a Chaos Control. (I swear I never see anyone talk about this ever grrr)

3: HE CAN SENSE SOL EMERALDS AND CHAOS EMERALDS.

This interaction in Sonic Rush confirms that he can sense both Sol Emeralds and Chaos Emeralds. For him to be able to mistake Sol Emeralds for Chaos Emeralds without seeing them, he has to be using some sixth sense, and has to be familiar with sensing Chaos Emeralds as well.

4: HE CAN SENSE FAKE/ARTIFICIAL EMERALDS.

(This is from a Sonic Station Live segment, unofficial translation found here.)

Knuckles goes looking for a mysterious Emerald presence, and finds Tails' fake Emerald. Pretty straightforward. Also, evidence of the Master Emerald itself being sentient and able to direct Knuckles to investigate anomalies. (I wish more people made use of that, too.)

5: HE... HAS A LITERAL TREASURE SENSE, APPARENTLY?

(This is from a story on the Sonic Channel website. Original found here, unofficial translation from Windii Gitlord's blog found here.)

This is... a strange one. A bit of an outlier. I assumed that instances of Knuckles sensing treasures were purely gameplay mechanics, but here he appears to literally sense a pair of combat gloves, which is completely unrelated to Chaos Energy. So I guess he can do that too? But maybe it's only because he was led there by the ghosts of his ancestors? Who knows.

Oh yeah. BTW, Knuckles gets sent dreams by his ancestors' ghosts. That is canon. Someone pls use that in some way lol

So anyway. There. A bunch of examples of Knuckles sensing all forms of Chaos Energy, not just the Master Emerald. Throw this at someone if they question the extent of this ability and want evidence lol