#m.e

[maghrabiyya]

Question for anyone else with M.E or with a condition similar where INTENSE FATIGUE is experienced:

Do you guys ever struggle so hard to wake up in the mornings that it makes you wanna cry? I describe this to my loved ones as having to climb the tallest mountain, and in order to wake up I need to reach the very top of that mountain.

It takes me so long to wake up, I consciously want to be awake and there are moments my eyes flicker open and I'm conscious, I literally think "Okay, I'm getting there, must keep fighting to be awake" - but it takes me hours and several tries.

Sleep pulls me back in and I struggle to escape. It is horrible. I know to non chronically ill people, the idea of sleeping so much must sound nice. But it is horrible. I hate it. I hate being a slave to sleep. It's so scary. I literally feel sleep pulling me back in and I'm like no no no please let me wake up.

When my M.E was severe, I experienced this constantly, every single day. My M.E has become moderate/mild, I've experienced this less and less.. until this last week. It has been every day.. again.

[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

[littlecherrylover]

I want to run, and run, and run. I want to put my head on my pillow and fall asleep.

I want to put my thoughts on pause.

I want to shut my mind.

I want to shut my mouth.

I want to shut my eyes.

I want the people around me to shut up.

Please, shut up.

I want to shut the door to my heart.

Closed. Forever closed.

I want silence.

I want peace.

I want sleep, free of nightmares.

I want a quiet mind.

But I’m just falling into an endless loop of loosing hope.

-Mama? You said the angels would hold me… but I can’t feel them or their wings.

It’s so dark, I can’t see anything…

But wait… there!

A lonely little star shines weakly in the sky.

M.E

[mindfogandsleep]

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

[collared-bitch-ayoooo]

Edward Nygma’s exasperated “That is most absolutely the point!” is a mood.

[khajit-has-wares-but-not-that]

That feeling when you as a spoonie overdrew today's mental batteries and now you've got a fever, like a damn computer that overheated

[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

[littlecherrylover]

And you love me

-Yes, I love you

And I love you

-Yes, you love me

But you left and now I’m stuck in this endless circle

And I try (-you try) I try to forget you but you won’t leave my mind

Please just leave my mind.

M.E

[saudade06]

I'm tired of the struggle

I'm tired of the fuss

I'm just tired of it all

[mindfogandsleep]

Take your meds

[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?

[feeelslikespace]

serenity waiting to be restored

[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 lie flat most of the time and 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.

[kittenscookie]

Now all I can imagine is the M.E Hermes trying to give cannon Luke as much spoils to get Cannon Hermes angry-

M.E Hermes: *Pulls up in the sexiest Cherry Red Impala you'd ever seen*

M.E Hermes: LUKE!

AU Luke: Hm?

M.E Hermes: Not you, the one stuck with a dead beat!

Canon Luke: Yes?

M.E Hermes: *Throws the car keys at him*

Canon Luke: *Catches them*

M.E Hermes: *Jerks head towards the Impala* It's yours!

PJO Hermes: HUH!?

Canon Luke: *Processing*

Canon Luke: ...It's mine?

M.E Hermes: It's yours! There are fake IDs and twelve hundred dollars in the center console, go enjoy your youth darling!

PJO Hermes: ...*Eye twitch*

Canon Luke: ...*Stares at AU Luke*

AU Luke: *Stares back*

*Both Lukes have a silent convo for about ten seconds*

Canon Luke: ...Alright, you coming?

AU Luke: Shiiiiiit! I was hoping you'd ask!

*Both bolt towards the car*

PJO Hermes: Hold on—!

M.E Hermes: *Drops the accent* Shut the fuck up! You basically abandoned him, he fucking deserves this!