2019
11.03

There was less pain today, thankfully, but I’m still very exhausted. I tried to tidy a bit earlier today, but I keep finding things that… I don’t know how to describe it? They are emotional things, I think, but the thing is that I feel disconnected from the actual emotion bit of them. For a moment I just feel myself smiling, either with bitterness or wistfulness, but then it passes and I don’t seem to really connect.

I have been like this before when I’m stressed and exhausted enough, so I don’t think I’m broken. I can’t even say it’s unpleasant: per definition it can’t be unpleasant. The smile is hollow and without meaning to me, it feels like, but it’s not like my body is just doing it on habit either, because I usually don’t make so many expressions when I’m alone. In general, I don’t make many sounds when alone. I don’t gesture when I’m alone. I don’t tend to laugh or audibly cry or sob when I’m alone. It’s as if even if I’ve learned these somewhat as a part of language, I use them as infrequently when I’m alone as I will talk aloud to myself. It just doesn’t feel natural to me.

But I was going through some old boxes in the kitchen and I found a lot of things. So many things I had forgotten I even had.

An old collar for a dog I had, made of braided blue fabric with a leather heart full of some of his fur.

A handful of mother of pearl mica flakes and stones, shimmering, like windows to another place.

Old blue, glass beads, like the colour of a rare sky.

Glow in the dark stars, fallen from the walls where I used to live.

Plastic roses, red and yellow and pink, without any stems to support them.

Tiny metal bells, red and green like blood and mould, blue and green like the horizon where spruces meet the sky.

A white Christmas tree ornament I used to keep in my ex-boyfriend’s Christmas tree, that I wrote our names on.

Big markers that haven’t worked for over a decade but I kept anyway for some reason, despite me never using them while they still worked neither.

So many glass marbles in so many sizes and colours, spotted and striped, translucent, like deep sea organisms.

*

I took them out, one at a time, feeling my lips move while my heart did not.

I looked at them for a moment, holding them in my hands as I waited.

I put them back into their boxes.

I put myself back into bed.

/pao – 23.53 – 3 nov 2019

2019
11.02

One of the most infuriating things about chronic illness and disability for me is the uneven functioning and the sometimes frequent inability to do any real planning, because things can go from bad to worse with no warning whatsoever and while I know what triggers or worsens some things, for others I have no idea and it seems to strike out of nowhere with no pattern I can discern.

This morning I woke up quite exhausted after sleeping very poorly due to pain. Not any kind of big, dramatic pain; not the unbearable, excruciating kind; no kind of pain worth taking any of my very limited amount of painmeds to ease; not the kind of pain that I can do much about at all but trying to ignore it. Just a sharp stabbing, pointy pain, cutting and tearing inside, making my hands spasm frequently, making it impossible to lay still. My knees constantly feeling like nothing but gravity was needed to make them bend backwards. Feeling like there were razorblades between my lumbar vertebrae whenever I moved. And my shoulders and hips deciding to just keep on popping and subluxing even while I was laying still and just trying to breathe.

So to put it mildly, today didn’t start off very well, and since I had been in pain all night the constantly increasing pain of the day started off higher than after a ‘good’ night. And then, a bit into the day, my right hip and lower spine and every single joint in my fingers decided to start hurting for real. The kind of pain that is difficult to explain to people who haven’t seen this happening to me in real life. It was suddenly, without warning, a Codeine Day. One of those days I really cannot manage at all without actually taking my painmeds.

In a way, it was good for two reasons:

The first reason is that when I am in less pain I can eat easier because less nausea and the physical act of eating (making the food, holding things like forks, chewing) is less exhausting, and if there is one thing I need right now it is eating. So I took the opportunity to eat about half a bag of crisps over the next couple of hours while watching Let’s Plays.

The second reason is that… you remember yesterday when I had a migraine? Well, that returned, with a fucking vengeance, just seemingly out of nowhere. Despite the codeine, it was bad. The kind of bad which – if I had not already taken my painmeds before this happened – would have most probably have led to pain induced shock and me going unconscious. That kind of bad.

I’m going to try to make instant potato mash with peas and carrot in it now before I sleep, to try to get something slightly more nutritious into me before I sleep.

Hopefully tomorrow I will have a day without migraine? That would be nice.

/pao – 23.54 – 2 nov 2019

2019
11.01

Usually in November I will participate in Nanowrimo, a wonderful writing challenge where one is supposed to write 50,000 words of a novel in a month. The last few years this has not gone very well for me, and this year I have a lot of health issues going on that makes me feel it would not be worth even trying.

Instead, I have decided that this November I’ll be trying my best to publish one blog post every day to this blog. Hopefully this will still feel like some kind of accomplishment in the end, but the pressure will be so much lighter. It will still let me participate in word sprints and engage with the Nanowrimo Spirit without letting it possess me entirely. Some of these posts might be interesting. Some will most certainly not be. See, I am doing this as much as a writing challenge as I am doing it just in order to get this blog going again, something my perfectionism usually puts an end to very quickly, but it is something I’ll be trying to overcome as well.

So consider this a warning of sorts. I cannot promise you some blog posts won’t literally cut off mid-sentence as midnight draws close (yes, I’ll try to publish one post a day on the right side of midnight!). Not all of these might be very coherent, but this too will be rather on the topic since I had planned to use the month mostly writing about different disability issues and challenges and sometimes my chronic illnesses and disabilities make me quite incoherent.

Thus it is appropriate that today, this first day, I’m having a rising migraine which is getting really distracting, so instead of a ‘serious’ topic I decided to write this introduction so you’ll all know what’s going on without spoiling any of the ideas for topics I have.

Oh no, midnight is approaching!

But actually, yeah, it’s probably more of a yay, actually. I will go hide in the darkness now and hope my migraine eases up enough to let me sleep and do a better job at this in the morning.

I hope you want to follow along on this adventure.

/pao – 23.50 – 1 nov 2019

2017
04.16

The One Minute Rule

I’m catsitting two cats.  When I get home after having been away, there’s always a lot to do. I have to check their food and the water, and almost every time I need to wipe up cat urine by the door, and clean the litter box, not to mention all the tasks associated just with coming in from outside: take off my coat and scarves, pull off the shoes, find a place to put my bags …

… all the while the cats are over me in seconds. Sometimes even before I’ve managed to get in through the door. To suddenly have a cat on my back who’s eager to rub her teeth all over the back of my head and another meowing loudly and sitting up on her hind legs to reach up to get kisses on the forehead does not help me do any of these things I have to get done.

It’s easy to get frustrated at them. They don’t understand all of these things I must do before I can settle and calm down after having been out, maybe having carried heavy things from the store or had a very upsetting taxi trip. They don’t know that every bit of me might be hurting.
(Although to be honest, they might very well know that last bit. They seem to always know that bit.)

But instead of trying to shoo them off, most often I will sit down to properly greet them. All the other things can wait, because I have the One Minute Rule. (I readily confess that I just made this name up, because I suddenly needed some sort of catchy name for this thing I do now when writing this post, and ‘the One Minute Rule’ is as good as any.)

The One Minute Rule says that within one minute of me coming home, both cats should have gotten enough attention and cuddles/petting/head kisses to be purring. It’s not like I’m counting the seconds or measuring the time, but it’s a goal that I work towards, and very often I seem to succeed.

All those other things just have to wait. Unless for example I’m in so bad a shape I need to go take meds or lay down or something else has happened that I really instantly have to deal with right away, I will sit there and make sure those cats purr before I get back up. Anything else is secondary to that.

Because, while they might not understand all the things I have to do every time I come home, what I understand is that they don’t mean to be annoying or in the way of me doing all those things I have to get done. I understand that they are just happy to see me again. There is no way for them to know that when I leave I will only be gone for a little while. There is no way to explain to them at what time I will return. All they know is that someone dear to them left them all alone, and now this person is back and they want to make it known that my absence has been felt and that they are so happy to have me back, so very happy.

The One Minute Rule is the least I can do, and everything else is secondary to that: met with such love, the least I can do is to repay them for the amazing gift that is, and show that the feeling is mutual.

/pao – 16 apr 2017 – 04.16

2016
01.06

I was just speaking on Twitter about heroes and the standard hero narrative and how I don’t like it.  About how I try to not do heroes and how my characters tend to be really broken and flawed people.  Through that I also got on a side track about how I doubt the story I’m writing will ever have a Happy Ending, because life doesn’t tend to come with a happy ending.

There are good times and there are bad times for all of us, but there is no happy ending waiting at the end of the tunnel.  And when one of our lives end, it’s not the end.  As this amazing tweet says; “Death is only the end if you assume the story is about you.”  Life goes on, and life in itself does not guarantee a Happy ending.  Life is full of dark and cruel and terrible endings.

After that I remembered that there is a character in the train world stories who collects terrible endings in her head as stories to tell herself as she waits for sleep at night.  Terrible ends to Protectors she has known and cared about.  As warnings.

So I tweeted parts of it, but here is a longer thing.  It’s about how she’s grieving the loss of a dear friend of her’s.  Who did indeed meet quite a terrible end.

She added another story to tell herself at night as she was waiting for sleep.  So many times she had been asked by new arrivals if she as an experienced Protector had any stories to tell them.  Just as many times she had told them that she did not tell stories.  Not a single one of the stories she collected in her head would she ever tell them.  They were not stories to be told to others over a cup of semi-coffee.  They were not stories to warm the heart.  They were all warnings.  They were all stories as dark as the tunnels outside, stories as hopeless as life.  They were all stories with as many bad endings to them.
Now she had another one, and hiding in the dark closet with tears trickling down her cheeks she closed her eyes and began to tell it to herself, her mouth full of the taste of his blood.

I think it is important to remember that in real life, there are no happy endings guaranteed, and often the endings to our stories are pretty grim.  These stories are just as important to remember and learn from as the happy ones, the lighter ones, the ones that give us comfort and joy.

Because sometimes, if we remember the bad endings we are told and taught about, we have a better chance of avoiding them.  That way perhaps, maybe if we’re lucky, we’ll find our ending when we meet it not as terrible as the endings of some of the stories we’ve been told.

/pao – 06 jan 2016 – 22.58

2015
09.21

A few days ago, I wrote down many of these low spoon recipes for a friend, and I thought that I should expand upon them a bit and put them up here in service for other people who might need some low spoon cooking ideas for bad days.  Some of these need a bit more preparation than others, but those who need that generally make up for that in being great to cook a bigger batch of and then keep in the fridge and heat in portions or to eat cold in order not to have to cook again for a few days.

For these recipes, I haven’t added any measurements, because honestly I don’t really use measurements when cooking.  Most of these are pretty much just about using the ratios you want and are happy with.  Perhaps one day I feel like having a lot of tomatoes in something and another day I’m out of tomatoes and making it anyway.  None of them are set in stone.

Take them more as inspiration and some sort of foundation, then experiment with the ratios and the seasoning to suit your tastes!  I use basil a lot, but perhaps you want other herbs and like them better, so go with what you want.

Read More >>

2015
09.10

Pao Pain Scales

I’m not pleased with most pain scales I’ve seen out there.  Many seem to be for sudden and not chronic pain.  So thought I’ll make some for myself, relevant to how I function.  They will be for overall pain levels, local pain levels, and headache pain levels.  Perhaps they might also be helpful for other people, but mostly they are meant to explain how I myself work, for future reference and for people who are wondering what I mean whenever I start sounding like the Shipping Forecast, going; “Right hip five, stabbing.  Left waist seven, constant.  Head three and rising slowly.”

Here is a first draft for my pain scales.  I have experienced all of these pain levels, and I try to provide examples of what they might be like where I can, but sometimes pain is difficult to explain.  I’ll improve them over time, and they might change when/if I keep on experiencing new kinds of pain and reaching new pain levels, but it’s a start.

Note that overall pain levels might be very much lower than any local pain level for parts of me.  If for example I have an arm and a leg which are both at five or six temporarily, I might still rate it as an overall four for the day or the moment if I can still function decently.  An overall ten would be much, much worse than having just a local ten, even if at those levels I tend to fall unconscious, and that’s probably a good thing.

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2015
08.18

And I always make sure to remember:

Helping people.  Helping people makes me feel hopeful: we create the world we live in, every day.  I try to create a better world and I know that at least I make the world a better place for some people.  I hope it spreads.  I hope we will have a world to be proud of, one day.

I try to accept help.  I’m terribly proud and stubborn and usually I don’t accept help offered to me even when I really need it and should.  Accepting help and leaning on others is pretty much the most difficult thing in the entire world for me, but I’m working on it and it’s getting better. It’s something worth fighting for, because we all need help. We all need one another.

Sometimes I am weak and need support, and sometimes I’m a burden on people I love.  Sometimes I make them sad, because they love me, and of course it makes them sad when I’m miserable, just like I’m sad when people I care about are hurting.  That is what love does to people.  Love is empathy.  Sometimes I’m a burden, and that is all right: we all are.

We are all weak sometimes.

We are all a burden sometimes.

We all have our own problems and weaknesses and our myriad different impossibilities.

And do you know something?

That is all right too; because we are not alone.  Together we make little of our weaknesses and impossibilities, because our impossibility is what someone else excels at.

Together we are whole.

Together we are strong.

I honestly believe in all of this, and that helps me cope too.  That helps me believe that there is a future, even when it is too dark for me to see it.

2014
10.23

About how I cope with life

A few days ago, I logged into my art tumblr, and was met by this:

I’ve been following you on Twitter for over a year (maybe two?) now and really think you’re a great person! I’m kind of shy to talk to you, but I just wanted to say that I suffer from depression as well and seeing you cope as well as you do has helped me cope better too. If you’re up to it, I’d love to see you draw a picture depicting different things that help you cope with your depression. Anyway, thanks for just being you. :)
Anonymous

I got really happy.  I like helping people, and I know how difficult it can be contacting new people, so I wrote a quick reply.  A thanks.

I decided to work on this.  Drawing about things that help me cope and make me happy; what’s not to love about it?  Today I sat down to think about it.  What helps me cope with depression and my life being difficult?  What can I actually draw?  How does one draw ‘conlanging‘?  How does one draw ‘remembering‘?  I wrote it all down.  First sketch notes: this is what I want to have in the drawings (because by this point, it was clear that this could not be just one drawing), this is what I want to say.  Then real text: this is what these things mean, this is why.  Then I began drawing.  I slowly realised how to draw ‘conlanging‘.  I still struggle with ‘remembering‘.

It will take several days to finish this, so I thought I should make it a blog post while working on it.  This blog post is pretty much my second sketch text.  I put it here, because perhaps it can help someone.  Perhaps it can make someone smile.  Perhaps it is just a good thing having it here on my blog.  For future reference.  For remembrance.

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2014
06.20

(to know the rain)

i want to throw my head back and scream
“nothing matters but the rain!”

i want to whisper back to the sound
“i love you – i love you, rain”

sounds of remembrance, sounds forgotten
the sound of thunder, the sound of rain

the darkness who has always been the same
the only one who can outlive the rain

the thunder who was before fire was
the thunder who is always chasing the rain

i want to walk into the world reborn
the world and my spirit washed by the rain

i want to pray with the sound of the water
for a new beginning all shrouded in rain

i want to read the old secret languages
the streams on the window and sand by the rain

i want to share this with you; the smell
and the taste and the caress of the rain

i want to take your hand, lead into the dark
i want you to know the rain

i want you to know the rain
my heart was drowned in a torrent of rain

i want you to know the rain
because nothing matters but the rain