Sunday, 26 January 2020

What no one tells you about being Housebound

Whether you're housebound some or all of the time, here are some things you might come across.

1. Time loses all meaning.

The five years I've been housebound feels simultaneously like no time at all, and an eternity. I regularly get my own age confused. When did that thing happen I thought was last week? At any point during the last 6 months, that’s when.
It’s like that weird haze between Christmas and New Year but ALL THE TIME.
The only reason I have a fighting chance of knowing what day it is is because of my pill box. And the alarm to remind me to take them, because what time is it again?

2. Schadenfreude on rainy weekdays

Would I rather be leaving the house? Yes. Does it make me feel much better that I can’t when Monday rolls around and its battering down? Also yes.

3. You will feel differently about the days.

You know what happens on Sundays? Bugger all. Limited access to services, no post, and everyone starts mowing their lawn. I used to love it, but now… HISSSSSSSSS!
By contrast, Mondays mean you have better access to the world, in whatever limited capacity you get it. Now I love them.

4. Someone will say “I wish I could stay at home all the time.”

Someone will say this. It could be a stranger delivering something, it could be a medical professional, it could be a loved one, but someone WILL say it. And, for a split second, no matter how well you may know and/or love them, you will contemplate murder.

5. You feel voiceless and vulnerable.

Your entire existence becomes dependent on the goodwill and efficiency of others. If someone messes up, you’re the one who suffers for it, and you have very few viable options to fix it yourself, or to make sure it doesn’t happen again.
When you can’t leave your house it’s harder to make yourself heard, or to exact change in your life or the world, and that sucks.

6. You miss really strange things

I miss supermarkets. And train stations. And walking along in the autumn feeling the cold air on my legs.
All those really mundane, boring parts of life when you’re travelling or doing a chore you’d rather not do… you don’t realise how much of LIFE that makes up until it’s not there anymore. 
Photos of exotic locales on instagram don’t hold the same sway because those always feel like a snapshot of someone else’s life. I miss my life. I miss train stations.

7. Isolation

However boring and isolating you’d think it would be, times it by 1000. Again, you don’t realise how comforting seeing different faces is until you don’t anymore. Even if you never actually spoke to those people. I spend 95% of my time with the same three people, and one of those people is actually a cat. And as such she’s unconscious for a fair chunk of that time.
I’m lucky enough to see a friend or two once a month (or two, if I’m not doing to so well and need a break). Before, even if I didn’t get to socialise as much as I wanted to, I still saw people.
I can and have gone months without seeing another person outside my parents, and due to health constraints, not even seen them very much. Even on good days, they have things they need to do, especially if they want to keep me as healthy as possible.
I love Thursdays because our helper lady comes round. And I love getting post because then I can say hi to the postman. Sometimes there’s a new courier! Much excitement.

8. Distraction

Living like this pretty much comes down to being able to distract yourself. Through meditation, books, crafts, using social media, even daydreaming. There’s a weird guilt that comes with not doing anything you can perceive as productive (thanks for that one, Capitalism) but honestly it’s the only way to cope.

9. Support is paramount

It’s entirely possible people could do this on their own, but it would be so much more difficult. Without support and understanding it would be very easy to develop anxiety and depression and then have a whole new set of issues to deal with. (If those aren’t the issues that led to you being housebound in the first place.)
If you, or someone you know, is partially or completely housebound then I’d really recommend not only for friends and family to support them (or you), but for them (or you) to consider researching options for professional mental health support. I have two, plus the two medical professionals who focus on physical issues. There’s no shame in it, and if your body isn’t playing ball then your mind needs taking care of just as much. I see the mental health professionals far more often than the physical.
It’s not easy to deal with, so get people to help with it.

10. You appreciate things more

I kind of hate bringing it up, because really, what a crappy trade-off, but you do appreciate small things more. When I first felt grass on my feet for the first time in three years I cried, even though I'd only been wheeled 25m from my door. Standing briefly outside in the rain took on a whole new meaning once I’d been inside for so long.
However, that’s a personal thing. Please don’t tell people they’ll appreciate things more like they should be grateful for it. 
It is a very small thing to have gained when the price is freedom, so let them feel that when they feel it, tell you when they want to share it, and let them come to it in their own time.

11. You will laugh at people who are “Stir Crazy"

During an illness or an injury, or during the aforementioned period between Christmas and New Year, people will complain of being stir crazy. It is their right to do so. However, it is the right of any housebound person to laugh at them and think “oh, you sweet summer child."

(The cultural significance of GOT has passed 
now but sod it. Nothing explains the feeling better, 
and the passage of time is screwed for me anyway.)

12. People could do it

Most people will say they couldn’t manage being housebound, and they probably think it’s true. They’re wrong. They could. If they had to.
Humans are extremely adaptable. It’s a different normal, and honestly not a very desirable one, but people always underestimate how easy it is for things to become your new normal. It might be hard, and you might get angry and upset, you might need a really good support network, but you’d do it.


Wednesday, 18 December 2019

This Year's Decorations

Hello my lovely loves,

I had wanted to talk about politics this month, but to be honest, I'm not really up to it yet.
I feel sad and frightened, but I'm trying to take heart in the face that, even though it may not seem that way, there are many, many people who feel the way I do. And that means there are people still left to fight for change.

In the mean time, I'm trying to be kind to myself and others. So, in the spirit of wanting to make people smile, I wanted to show you the Christmas decorations I made last year that I sent as presents this year.

I really wanted to make Nutcracker soldiers after seeing some made from wooden clothespins online. 

However I forgot one important thing.

Nutcracker soldiers are terrifying.

Look at these two on the end. Jesus.

Maybe the uniforms will make it better?

Oh god, it's worse.

How is it worse?

The teeth don't help, but if you don't have the teeth it's not a Nutcracker.

Is it the eyes?


It's definitely the eyes.

Like staring into the abyss.

Ok, new plan. I'll repaint the eyes into cute smiley eyes. And hopefully that will make the mouth cute instead of... vaguely flesh-eating.

Ohhhh thank god. The nightmare is over.

Time to paint the rest in bright candy colours.

Like happy Brussel sprouts.

If Wes Anderson did the Nutcracker.

The pink ones are my favourite. 

Merry Christmas, peeps.


Monday, 18 November 2019

An invite

Hello my lovely loves!

Something a little different today!
One of my friends asked me to use my more relaxed sketch style that I use when drawing on location to create a wedding invitation design for him and his ladylove.

They got married in Italy in October so the design had to reflect both the season and the region. This was the final outcome.

Congratulations, guys!


Friday, 1 November 2019

Halloween 2019

Hello my lovely loves,

Two posts in one week - will wonders never cease! To be honest I felt I should, because after I told everyone about my Christmas cards they sold out so quickly that I feel a bit guilty leaving that post up when people won't be able to buy them!
Thank you so much to everyone who bought them. It was so wonderful knowing that they've all been sold and that people liked them so much.

So I thought it was an excellent time to show everyone my Halloween costume from this year.

I knew I wanted to be either Morticia or Gomez, but I couldn't decide which, so I decided to be both!

I've seen half and half costumes done before, but I've always felt like two characters from the same thing (or perhaps two characters that are played by the same person) have an edge over man/woman costumes - they just just make more sense to me.

Tiny Hannah accompanied my costume with her own Tiny Wednesday outfit, complete with axe, and Mum and David were Grandmama and Fester.

Poor David. He's never even seen the Addams Family (somehow??) and had to look up what the character was like to know what to do. As you'll see from the photos, he tackled this issue by picking one facial expression from google images and sticking with it religiously in every photo.

I also created two YouTube videos showing how I made the costume, the props and the extras, like the Thing I made from a hand shaped candle.

Part one is costume construction.

Part two is extras and props.

And without further ado, here is our Addams Family. Happy Halloween, guys!


"Don't laugh. I know he's still making 
The Face, but don't laugh."

Monday, 28 October 2019

Christmas cards :)

Hello my lovely loves!

It's been a little while while I've been preparing for Halloween and Christmas fun, but finally it's all come together. My cards are now on general sale!

These have really been intense to create. It's basically taken me all year because there is so much work in them. But on the other hand, that means I'm particularly proud of them.

I decided to create a card/craft kit hybrid. I always struggle if either I want to give a gift but can't afford it, if someone is in that grey area between card or gift recipient, or if they live abroad and sending a full gift is hella expensive.
So... craft kit cards!

Cards are available on my Etsy shop here, and you can check out the video tutorials here (gingerbread house) and here (carousel).

As ever, 10% of the profits of the cards will be going to Crisis at Christmas, to give much needed support to the homeless.

I hope you like them as much as I do!


Monday, 2 September 2019

Standby Hedgehog: The Prequel

Hello my lovely loves,

Just a quick one today to ask you to bear with me. I hate to break my once a month streak, but summer has proved rather busy and exhausting so I'm afraid it will take a little time before I come back with another in-depth post.

There will most likely be some crafty bits coming up soon, however, as I am stuck into Halloween and Christmas organisation now. It takes so long to do everything now that I plan things at least a year in advance; I already know what next year's Halloween costume will be, and I have an idea for the one after that as well.

In the mean time, here is Standby Hedgehog living his best damn life.


Tuesday, 16 July 2019

Disabled Pride and "I don't see you as Disabled"

Hello my lovely loves,

Today I wanted to talk to you about something I’ve seen online, particularly as the summer includes a lot of Disability Pride events.

Recently a hashtag spread around twitter - #disabledcompliments - and I want to address it a bit. 

It’s similar in a lot of ways to my post on the “You Don’t Look Sick-ers” and my guide on “What not to say to Sick People", but it’s been a little while since then and I just wanted to update my thoughts on it, because there was one thing that cropped up that I don’t think I mentioned in those posts.

"I don’t see you as ‘disabled'.”

This is a fairly common thing to hear, and it’s pretty clear that those saying it think they’re paying you a compliment. 

I’m going to give you a hint here - it’s not.

“Don’t worry, I don’t see you as…” never ends with a positive statement.
The most common way of ending that sentence is with something negative. Lazy, stupid, bossy, weak, whatever it is.

When someone says this then it’s to reassure someone that they’re not something bad. It’s a statement of commiseration.
And even if the person saying it loves the disabled person, they’re still saying that they think negatively of the disabled community at large.

The disabled person doesn’t stop being disabled because you said that. They know they are. They now also know that you think being disabled is inherently negative.
You’re also signalling that you’re less likely to help them with things on the basis that you don’t think they’re disabled enough to require it.

Not being considered disabled, or disabled enough, is a legitimate health risk for a lot of us. It means we’re less likely to be given access to support (monetary and otherwise) and things we need to live a healthy life. This is especially true of those with invisible illnesses.
If someone said “I don’t see you as ‘having a severe peanut allergy’” to someone with a severe peanut allergy, it would a. be ridiculous because they do, and b. make them extremely wary about eating anything the person got them.

I don’t like being disabled by my chronic illness, but... my chronic illness happens to be very disabling. Some people’s might be less so, we are not one homogeneous entity. Some may have had their illness or disability their whole life. They likely see it as an integral part of their personalities, just like being left-handed, or gay, or particularly keen on avocados.
Those differences don’t make a disabled person lacking.
Whether we like it or not, those illnesses or disabilities are a part of us.

It is not for you to presume that someone dislikes a part of themselves. 
If you came up to someone, particularly a stranger, and said, “don’t worry, I don’t see you as ‘ugly’”, that would not be a compliment.
And if you replaced “disabled” with any other minority group? Still looking like a compliment? No. You would sound racist/sexist/homophobic/transphobic/etc. Because that’s what you'd be.

You do not get to decide what someone is or isn’t, and you do not get to decide whether the thing they are (or aren’t) is acceptable.

This issue relates very closely to the “don’t let your disability be your identity” trope. Disability or chronic illness is seen as something so negative, that the concept of being proud of it or including it in our outward persona is completely incomprehensible.
It’s often framed as a tool to try and motivate the disabled people into more fulfilling lives, but the key here is that people think that “fulfilling” means “as an abled person lives”.

This concept is so ingrained that it’s usually impossible to comprehend someone living a fulfilling life AND being disabled. People assume the two are mutually exclusive.
And therefore that anyone who isn’t pursuing an abled concept of living a fulfilled life is giving up on being fulfilled in life (or life itself) altogether. 
It’s often those who struggle the most to seem “normal” and don’t talk about their conditions that are the most rewarded by society, even if doing so is injuring them or exacerbating their problems.
When people accept their conditions and take steps to make their lives easier, especially if that makes them appear more visibly disabled, is when they’re considered to have given up.

“Giving up on life” is bandied about A LOT. But giving up on an abled life is not giving up on life. It’s knowing your limitations, accepting them, and living the most fulfilling life you can.
And EVERYONE, disabled or not, has limitations.
I’d argue that most abled people are not able to live the most fulfilling life they want to either, because very few people have the access to the funds, or support necessary to do so. Perhaps they suffer from another kind of discrimination that prohibits them from doing things they’d otherwise enjoy. 
Very, very few people achieve all their dreams in life.

There are things in this life that I know I may not get to do because of my condition, and that is heartbreaking. But, there is absolutely no guarantee I’d be given the opportunity to do them if I wasn’t sick. None. That is life.

Some people do achieve things, amazing things, with disabilities. And I’ve spoken about this in a previous post on inspiration porn, which is where Disabled People Achieving Things is held up to society in general as proof that humans can do anything IF THEY JUST PUT THEIR MIND TO IT (and looks down on those who don’t excel or achieve these things).
Disabled and chronically ill people are treated both as less than human and more-than-human. Often at the same time.

After a while, all of that starts to make you think of it with less equanimity. Even the most earnest “inspirational” video can come across as, “well if a DISABLED PERSON can do it, just think what THE REST OF US could do!”

When society continually puts people like you forward as inspiration fodder, but looks down on those of your group that don’t excel, it can make you feel jaded. It can make you feel ashamed of who you are, because we are no less immune to these assumptions than anyone else.
But it can also make you double down, and feel all the more determined to be proud of who you are.

I don’t pretend to know everything about this subject: our issues are complex and I can’t speak for such a massive, diverse group, but I know this. 
We’re not performing monkeys. 
We aren’t here to make people feel good about themselves, or to push them to try and make something of themselves, or teach some grand, important lesson in life. If someone learns something, fine, but we’re not background characters in an abled person’s life, we’re the stars of our very own technicolour stories.

Yes, we have issues. We have to do things differently, or not at all. But, you know what? So do lots of people. I can’t go run a marathon. A lot of abled people can, but... they don’t.
I can draw, pretty bloody well, actually. A lot of abled people can’t.

We’re not more or less than human. If anything we are a concentrated version of humanity. Its ingenuity, its flexibility and ability to cope with change, its perseverance, and yes, its pain, its struggles and its lowest moments, where sometimes there is no recovery.
We are the most diverse minority, with people from every race, religion, age, gender and sexuality. We are a microcosm of all the ups and downs in life, and all the ways people can respond to them, is displayed in each of us.
When you look at us we’re not subhuman, or superhuman, we’re arguably the most human humans.
And one way or another, by accident or age, you’re probably going to be one of us. And that’s ok. You should be bloody proud of it. 
Because we are.