A topnotch WordPress.com site

Archive for the ‘Chronic Illness’ Category

Dungeons & Dragons & Disability

So here I am still signed off from work. And over the course of this year I have truly struggled to find join in any of my old hobbies except for one, which has taken over and restarted my creativity: Dungeons and Dragons. First let me introduce myself: I am Helja, the dwarven cleric. I am Anakis, the tiefling Druid-warlock. I am Meredith, the human sorcerer.

For anyone who doesn’t know what it is, it is a Table Top Role-Playing Game (TTRPG) typically played with pencil, paper, dice (LOTS OF DICE), and imagination. One person in a group is the Dungeon Master (or Game Master), and they weave the story and the settings and battles, and play any number of characters that the Players will encounter and decide how to deal with. Players design a character that they role play as, making decisions as this character, not as themselves. The basics of this character are Race (Human, Dwarf, Elf, Halfling etc.) and Class (Rogue, Cleric, Fighter, Wizard etc.) but you then add to this by thinking up a backstory, a personality, and flaws with your DM. All this to hope that your characters get on or at least tolerate each other enough to work together to achieve larger goals – I’d say save people but there are evil characters and groups so it really depends! It’s not just a case of stabbing and burning everything you meet, you get to know characters of the world, try and use your charisma to maybe avoid violence…and yes sometimes kill the hell out of some things and loot their body and home. The more you do, the more you level up, the ‘stronger’ you get, the harder the adventures can become. It sounds trite but imagination really is the limit with the D&D. Well imagination and dice rolls. This is the basics but if you want to know more find your local tabletop game café and see if you can sit in on a game. Or drop me a comment and I will try and answer your questions.

Anyway, back to the topic. Being off work as long as I have, and recently being unable to volunteer, I’ve been going round the bend. I’ve been bored, depressed, lost, and almost incapable of seeing past the pain I’m in day to day. I don’t know when this happened, but at some point D&D became one of my main interests and coping mechanisms. I think it comes down to several aspects of the game.

1) Socialising: I know that once a week I am going to meet up with my friends over Skype and have fun not only role-playing and adventuring together but also catching up and chatting and just create together. This leads me nicely to…
2) Creativity: Being ill has led me to struggle with getting the mental energy to work on my creative writing and story plans, my hands have been so painful that I’ve struggled to hold my pencils at the right pressure. I have so many ideas that I want to complete (or even start) and it’s frustrating as all hell to have stuff swirling round your head that you can’t enact. Enter D&D. Obviously my friends and I don’t know what we’re all going to do, so our role playing is a form of fantasy-themed improv, which allows me to be creative in a sense. I have designed and made a dice tray including a dragon, a sword made of dice, and the D&D logo, when I’d been really struggling to come up with pyrography designs for my wooden boxes. Designing the backstories for my characters and writing them up has helped me get back in touch with my writing because…you get to know your character so well so I just like to write it out in full so that it’s almost like a short story in itself to go over stuff that doesn’t/hasn’t yet come out in sessions, because their stories are so vivid in my mind. I have some more stuff planned I want to make (drawings, more dice trays, story about my other character) and it’s exciting to feel this imaginative and creative again.
3) FanDom: Now as well as my own game I play with my friends, I have got INTENSELY into Critical Role this year. If you don’t know what this is, it’s “a bunch of nerdy-ass voice actors” (Matt Mercer, Liam O’Brien, Sam Riegal, Marisha Ray, Taliesin Jaffe, Laura Bailey, Travis Willingham, and Ashley Johnson, with the occasional nerdy guest) roll dice and play D&D for us to watch on Twitch or YouTube. You might think that watching people play a game that occurs for the most part in other people’s head wouldn’t be that interesting but you’d, in my opinion, be wrong. They’re a group of friends and they genuinely look like they’re having fun together, even during the painful parts of the story (they have genuinely cried during parts of the story, as have some of my friends in my game, just showing that D&D isn’t just dice and numbers, it’s characterisation and emotions). The DM creates incredibly vivid and varied worlds, which is part of what makes the show so alive as, without visuals like a normal show, Matt has to put in a lot of work to build it in our heads. This show has inspired fanfic, fan art, fan music/musicals, and clothing and accessories on places like Etsy. As I get somewhat socially anxious, having CR and D&D as a whole as interests means that with a proportion of people I have topics to talk about which makes me a little less stresses. Additionally, the cast of CR have inspired me to get more into D&D helping use my character to choose spells, not just choosing the ones that do the most damage. Being able to share in the CR fandom inspires me and makes me feel less alone in the world. Also nice to see other people with disaster characters 😀
4) Now my final reason is a bit bleak and maybe hard to explain, so settle in. I am disabled, mentally and physically so and despite the fact I’ve been living with these illnesses for between 1-8 years, I still haven’t come to terms with the restrictions, pain and general suckiness that is life as a spoonie. I know that I could be so much worse and I’m thankful for what I am currently still able to do, but there’s so much stuff I thought I’d have done or be doing by now and yet here we are. There’s not a day that I’m not in pain and it’s easy for that to wear a person down. Now all the reasons above make me feel better as a disabled person, but the act of playing D&D helps in and of itself. I think it’s because my imagination is still very active so it’s highlighting something that hasn’t been taken away by ill health. The characters I have made aren’t perfect, they have flaws, but they can do magic, they can fight monsters, if they want to, they can become heroes. It’s easy for me to think of all the stuff I can’t do in the real world, but my D&D characters can try and sometimes succeed in incredible adventures, that I could never do (even if I wasn’t disabled!).

I hope this all makes sense to those who play D&D or watch Critical Role. If you think you might want to play D&D, I’d really recommend watching some recorded games (Critical Role, High Rollers, Hells Belles are some names off the top of my head) or just going to find a group. It’s amazing how easy it is to talk to new people when you have a nerdy past time in common, especially when you don’t have to be you for much of the time.
The last thing I want to say is that if you have any mental ill health, there have been some evidence-based studies showing a decrease in some symptoms after regular playing of RPGs like D&D. I will try and find a link to this later if anyone is interested.

I won’t say that D&D has saved my life but I think it’s saved my mind…well, as much as it can be.

Advertisements

Creative Writing: Illness

Now as you might gather from the title, the creative writing that follows was difficult to write, harder to edit, and has been almost impossible to share. While I do on occasion write happier poetry, a lot of this writing was done, at least in draft form, while I was experiencing the worst parts of my illnesses. Which generally means I am not able to think of the positive nuances of being chronically sick. I promise to try to write more of that stuff soon as it’s not all bad I guess. Again,  I welcome critique but please especially with this, be gentle with the criticisms.

I will say that I was inspired to share this stuff because I finally watched the documentary ‘Unrest’ by Jennifer Brea. It’s heartbreaking, empowering…it might not be an exact match for my experience of ME but it’s an experience and seeing something so raw and true meant the world to me. So go and watch it, it’s on Netflix.

Filled

They say pain isn’t forever
Suffering comes and goes
But when hope fades and faith disappears
What else can fill me?

Symptomatic

Fog
It comes like treacle
Moving slowly, so slowly
Until suddenly
It’s swallowed everything
Fog
It devours
My memories, my speech
My own damn thoughts
My words
Fog
Closing in, growing thicker
It steals my understanding
Of how the world works
The very basics
I want coffee, but how do I do that?
How do I finish my sentence?
Was I even talking?
Fog
How can I find my way
When the shining guiding light
Is absorbed?
Fog
Chokes me
That goddamn fog

P.E.M

When it hits
And it will hit
It comes hard, it comes fast
The sheer weight
Drags you to the ground
Hooks and barbels
Pull
You should’ve expected it, should’ve planned
But fuck pacing
Push on
You can make it
The sofa is soft, cushions and blankets
Should make it better right?
That dead weight
Not just pulling now
But pushing
A collapsed ceiling, weighted down
It hurts, it aches, it kills

When it hits
And it will hit
It comes hard
It comes fast
Flare

(PEM stands for post-exertional malaise and is a driving characteristic of ME)

Chronic

Always there
I open my eyes and you’re there
My longest relationship
Never wavering
You won’t leave
Who am I without you?
These days I struggle
To even remember
My ever-present companion
I’ve tried to break up
But you always come back
I don’t fight hard enough?
Maybe
Maybe I’m tired of fighting
You’re there
Closer than my shadow
Growing larger
You strike my body
Inside to out
Inflicting
Chronic

Seesaw

I heard once
That bipolar is like a seesaw
Like in a children’s playground
I can see why they believe that
What goes up
Must come down
Hell, maybe I’d agree
If that seesaw
Went up to a burning star
And fell down
To the Underworld
Up. Down. Destruct.
Also
That seesaw?
Put it on a roundabout
That’s what they don’t tell you
It’s up, down, side to side
Loop the loop
Bipolar
It’s a whole damn fairground.

Where I’ve Been + Updates

So, as per usual, there’s been a huge gap in my postings. Several things have changed in the last 10 months that honestly, I’ve barely been able to process it myself, never mind analyse and share it.
If you’ve read this blog, you will know that I have a veritable smorgasbord of chronic illnesses vying for my attention right now. Well, this year, after seeing a rheumatologist, I’ve also added fibromyalgia and joint hyper mobility syndrome (although in the information he gave me, it also called the condition Ehlers-Danlos syndrome, hyper mobility type. I don’t want to put words in his mouth but it would explain one of the other weird stuff, like my weird skin, my ribs shifting into the wrong place etc.). I mean, if I started putting the acronym for these things after my name, I’d look super clever.
Sigh. Have to try and laugh right? But the other change that’s happened, I’m still really struggling with. I have been put on long term sick from work, as something was constantly kicking my ass and stopping me putting out quality work. Now, why am I struggling with this? Well, there are a number of reasons (though I am annoyed at myself for many of them, as there’s a lot of internalised ableism going on in my head). Forgive me, but I’m going to use this blog post to try and work this stuff out.

1. I judge myself on what I am able to do. For most of my life that meant judging myself wholly on my grades. I studied and worked and pushed as hard as I could, and that was for all tests, including mocks and small class assessments. Despite this, I have cried at every results day because I’ve never done “perfect”. I think this comes from being told at a young school age that if you work hard, then you’ll achieve your goals. I’m pretty sure everyone was told similar? Well, I wanted to be a doctor so I knew what that meant in terms of what kind of grades I was competing against. And when I got what I did…clearly I didn’t work hard enough. Right?
2. This next part is going to be difficult to write. Hell, I’ll probably delete this whole thing. Basically, I have long held, unshackling sense of self-loathing. Psychologists and psychiatrists have asked me when it started, why I believe these things about myself but the issue is I don’t remember any other way of thinking about myself. So to live with these beliefs, I have had to frequently try and distract myself and prevent myself from getting lost in those negative (and loud) thoughts. When you have work to do, this is relatively easy as there’s always stuff to be doing. However, being off sick means I’m alone a lot, and I struggle to get out and busy as 1) many things cost money which I have less of now 2) I struggle to get out at times because irritatingly I *am* sick so even things that I can do for free (nature, National Trust) it’s difficult-impossible to get there, enjoy the space, and get home safely.
3. To get back to work, they need to see that I am well enough to make it back full time, without the hours making me sick/relapse. However, it is actually becoming pretty difficult to find a voluntary position that a) isn’t physically demanding to make my pain and physical fatigue increase b) is more than just ~3 hours one day a week (which isn’t a decent representative of my work week). I tried various websites and local charities but after applying for a few different ones, I’m hoping I might have the answer (see below).

As it is, I don’t currently have an answer to most of this (not exhaustive) list. I’m having a lot of doubts regarding what I can and can’t do. All these conditions interlink with each other (physical to mental and vice versa) and I’m so scared that I won’t be able to handle full time work again. I don’t know, I hope  I can, but there’s so much stress and constant deadline after deadline. But I love working where I do, I don’t want to have to find something. I’ve spoken with some friends and I know some people are happy working somewhere they don’t care about and the money is enough as they can do do fun and exciting things outside of work hours. I don’t know if it’s because of my weird brain, or just my personality but that’s not enough for me.

However! I don’t like to end on a sad note if I can possibly help it so I’ll end this by sharing some recent good news (and the start of my road to going back to work). I’m going to be volunteering as an Historical Engager for the National Trust. I am pretty excited, I love history, and I’m looking forward to hearing more about the property itself (Anglesey Abbey, if you’re interested).

I’ve wanted to apologise to my friends, I’ve definitely not been as active in pursuing hang-out times. And it’s taken its toll and I miss y’all so much. See or speak to you soon I hope.

PS I’ve been think

 

northernfool

The Ramblings of a Foolish Northerner

Chemistry Matters

A blog about chemistry in real life

The Thiessen Review

Helping to find your next great read . . .

contessacreate

we interact, we love, we create

My Guild-type things

4 out of 5 dentists recommend this WordPress.com site

My Microtia Journey

A 21 Year Old's Story About Her Microtia Surgeries

emmielociraptor: naked ape in a dinosaur onesie

website and blog of a PhD student

Ben C. Turnbull

Transitioning into science, and other interesting things. @bencturnbull #UG2PhD

Blogging for a Good Book

A suggestion a day from the Williamsburg Regional Library

Books, j'adore

story lovers unite

justanotherbloggerinorbit

A topnotch WordPress.com site

The WordPress.com Blog

The latest news on WordPress.com and the WordPress community.