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.

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.

Sharing Creative Writing – Poetry Edition

If you read my last post, you’ll have seen I shared my first piece of writing probably since I was still in education. Well I’ve shared a short story, and now I’m doing the only thing harder: sharing my poetry. My insecurity around this is super really high so if you aren’t into poetry that is still very raw then I’m really sorry for this tangent of content. But this is important to me, as is mental health awareness and outreach, as is talking about science, and gender, and feminism. This blog might be a bit of a jack of all trades but that’s probably a good summary of who I am!

So here’s three that I had typed up from my writing book. Enjoy and please let me know what you think (if you’re gentle!)

 

Storm A’Coming

Weather alert, flooding warning
Thunder and lightning, weather storming
Sky outside bitter & grey
It must end soon. We pray
Rumble above and a flash of light
Clouds rolling faster, gods shout and fight
It darkens further, yet it’s early day
Animals restless to go out and play
I make my way slowly outside:
I dance in the storm
Cry in the rain
Lose myself
I refuse to hide.

Process

Cold blank nothing
Glaring whiteness
Cursor beating like a cursed heart
Write write write

On it blinks like a mockery
Hours wasted on “research”? Please
Social media, nothing nothing
Writers block, head in hands

Type type type
Write write write

Beats of a drum
Demanding, do it now
Work time now
Complete me

Life

Is there life in a graveyard?
I’m not trying to be funny, or witty
But why else erect stones and monuments
If not to draw out the living?

Some columns have fresh flowers
Cards and pictures lined up too
If nothing else they brighten up this space
Until they collapse and are washed away

In a graveyard of course there are trees
And grass and birds and insects
These lives don’t understand the rules and expected behaviours
Ivy pulling on stones, cracked, lying broken

Is this life surrounded by death?
I’d suggest rather the opposite
Though we will pass and what we know will pass
Life, whatever it is, will find a way

© Kathy Hadfield 2017-2018

Sharing My Creative Writing For The First Time!

So I have done something that I find pretty scary: I shared my creative writing! Now I have to admit that I have been to a writing group but sharing within a small group of writing enthusiasts but with people I didn’t know is something I just find so excruciatingly difficult. I’m scared I come across as cliché, immature, or just plain bad. However,van amazing LGBTQIA+ writing group called The Wilde Ones started up where I live and I just had to give it a shot as I wanted to be part of a community again.

Now in this vein of trying to be ‘confident’ I thought I’d try some of my short stories and poetry on this blog as I like this space. I’m going to post my short story The Necklace (below) as it came 3rd in The Wilde Ones’ first ever writing contest and thought I’d take the plunge.

Let me know what you think! Can you recognise what I drew from in terms of inspiration? Can you guess what I’d been reading at the time of writing this? Ask whatever you like, but please be as kind and constructive as you can.

The Necklace

She told her to never put on the necklace.

It didn’t hit her immediately when she arrived home from work, though when looking back at this moment, memory has added a sense of dread and unease that was scarce felt at the time. After putting down her bag and coat, she headed straight for the kitchen and put on the kettle, as per her regular Monday to Friday routine. The only out of the ordinary thing was the large bouquet of flowers she’d picked up. Although they were to celebrate their one year anniversary at the weekend, the actual date was today, so she had picked up her favourite flowers, tulips, on the way home from work. The shock of violet was vibrant against the monochrome tissue paper wrapped around them.

“Olivia, want tea? Coffee? Livs?”

There was no response. She looked at her watch, thinking that it was unlike Livs to not be home by the time she arrived. It was at this moment she saw a mug of tea sat on the kitchen table. It was lukewarm to the touch. A running joke between the couple was about how she frequently forgot about her hot drinks, but Olivia? Never. She loved her drinks burning hot, and would refuse to drink it if it was even remotely cool. That was when she started to feel the first tingling of concern. She was often prone to overreaction but with the time, and the drink, no message…she was feeling rattled.

She started to head upstairs, flowers still in hand. Who’s to say she didn’t feel well, maybe she went for a lie down and fell asleep? As she reached the top of the stairs, she looked down the landing and stopped dead. Her own family portrait, in its antique frame was hanging at an angle.

Oh Olivia, no. I told you about this because I thought you could handle it! Thoughts continued to race but eventually the pounding at her temple downed them out completely.

With nervous sweat starting to gather at her hairline, heart in her throat, she strode towards the painting and looked behind it. Sam steeled herself against what she knew she would see, and opened the family safe. Empty.

The flowers dropped to the floor, never to be given.

She got out her phone as she walked towards the bedroom she shared with Olivia. Had shared. Walked, not ran, because she knew what she was about to find. Speed would do nothing to help, not now. She called an ambulance, gave the address, and said they might want to send the police, and hung up. Then, she selected her father’s number, who answered on the third ring.

“Hey Sam, everything OK? Your Mum and I are just sitting down to-“

“Dad. She found it.”

Olivia was lying crumpled on the floor of the bedroom. Her once beautiful, twinkling eyes were dull and wide open in terror. Raw and angry welts at her neck were clear even from the doorway. They were clearly fingernail gouges, desperation obvious despite Sam not being able to see the skin underneath her own nails. Sam knew the drill. The distress was clear on her Olivia’s face and the clawing would seem to indicate something stuck around the neck, though her throat lay bare. Again, Sam was unsurprised, though the repetition of events did nothing to ease the broken feeling in her heart. The necklace that Olivia, her Livs had found, ignored the warning, had tried on in front of the mirror, that damn necklace, Sam knew it would be back in the safe by morning. As if nothing had ever happened.

“Olivia found it Dad. I really thought she’d make it, that we’d make it. It’s our anniversary today, she should’ve been safe by now!”

“Not necessarily, love. When was the date, the time even, of the night when you kissed and decided to be together?”

Sam looked at her watch – that her early anniversary gift from Olivia, was still ticking, still alive when she was gone started to bring grief-induced rage until she saw the time. Rage retreated to be replaced by a growing numbness. 17:56

“6pm Dad. If she’d ignored it’s call just 5, 10 minutes  longer…” Her voice fades. The unspoken words clear as day.

“I’m so sorry sweetheart. There’s always next time, I’m sure that time they’ll pass.”

“Yes Dad. Of course. There’s always next time.”

She’d told her to never put on the necklace. She’d always told them.

 

© Kathy Hadfield 2017

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

 

Bipolar & ME: Part 3. Treatment

First off: apologies for the gap between postings. I’ve been a combination of on holiday, depressed, hypomanic (not “full” manic though, yay), stressed, ill, and fatigued/exhausted. I will try and be better. Anyway, onto the blog post!

Treatment!

Well, where to start. Like any mental illness, most kinds of treatment can be broadly split into two:

• Talking therapies, including
  1. CBT (Cognitive Behavioural Therapy)
  2. CAT (Cognitive Analytical Therapy)
  3. Psychoeducation Groups
• Medication, including
  1. Antidepressants
  2. Mood stabilisers
  3. Antipsychotics
• “Other”

By no means is this list exhaustive, but I’m just going to cover the ones mentioned because not only are they the most common, they’re also things I have either knowledge or direct experience of.

NOTE: I think I’ve made the point in earlier posts that mental illness can present in varying ways. We are all individuals, even if we have the same illness. THE FOLLOWING INFO IS JUST MY KNOWLEDGE AND EXPERIENCE ONLY. SPEAK TO YOUR PSYCHIATRIST/PSYCHOLOGIST/DOCTOR ETC. BEFORE CHANGING MEDICATIONS OR TREATMENT.

• Talking therapies

So I admit here and now, I have not had the best experience of talking therapies so far. I tried counselling, was referred to CBT (that went terribly, though partly because I don’t think my therapist and I “gelled”, I might not have been ready for it, or whatever…but I had three sessions and was just sent back to my GP), tried ACT (Acceptance and Commitment Therapy) which was a group trialled at my university. It went better than CBT, and a lot of the ideas behind it made sense, but I’m not sure I managed to take enough of it on-board seeing as it was during my final year of university and I was basically one huge ball of stress/fatigue/badness.

I don’t know if it’s relevant, but I tried all of these methods before my eventual diagnosis of bipolar. Since diagnosis, I have been to a Psychoeducation group, and am on the LONG waiting list for CBT (and eventually CAT) with a clinical psychologist, as opposed to a wellbeing practitioner or therapist. I’ll update the blog after I have the treatment with my feelings on how it went, but I don’t expect it to be soon unfortunately). Since I have not had a full course of CBT or any CAT, I’m just going to provide some links so you can read about it from people with more knowledge on them:

http://www.nhs.uk/conditions/Cognitive-behavioural-therapy/Pages/Introduction.aspx

http://www.acat.me.uk/page/about+cat

The Psychoeducation group is pretty much what it sounds like; a group that helps educate you on your psychiatric/psychological condition. There was a group of us, maybe 9 or 10, who had all been diagnosed with bipolar (mix of I, II, cyclothymia), of varying lengths of diagnosis, treatment, experience and severity. This was particularly useful as I’d only been diagnosed for around a month or so, so learning what things I had been experiencing were actually due to this illness was eye-opening. You might expect this kind of thing to be incredibly depressing but surprisingly, I didn’t find it so. Yes, there were topics that were covered that weren’t exactly pleasant but we were given so many resources and a variety of methods to try and help us cope. No, they didn’t all work, and the paperwork we were given was a little overwhelming but I appreciated the variety because many of the things have really helped me. I know that for many people however, much of this course was too basic, as they’d lived with it so long that they knew all the symptoms and had tried most of the things we were recommended. I hope they didn’t think it was a complete waste of time, because their knowledge and experience was incredibly valuable to me. According to a talk given to the group I attend run by Bipolar UK, Psychoeducation groups have been shown to be one of the most helpful and beneficial groups for bipolar patients, in terms of helping them stay better for longer (I won’t go into the full details of that talk, though it was very good…maybe in another post).

• Medication

Ah. If there’s anything that causes more controversy, stigma, and newspaper articles than psych medications…well, OK, there are a lot of things that cause that, but you catch my drift. There’s a lot of misinformation, scaremongering, and stigma about medications for mental illness, and I can’t deny that there’s probably a whole lot of over prescription going on. (The reasons for that last thing are many, but generally underfunding of the mental health sector and understaffing of specialised doctors and therapists are two big ones). Medications are not the be all and end all, and god knows they don’t solve everything. However, for some people, medication can/will save their life. And for me, they allow me to live relatively safely and ‘normally’, hold down a job, etc. There are still life stressors that affect me and I have to watch out for them, but even when I do get ill, it’s significantly less severe than when I was not on medication.

Also, some medication carries more stigma than others, so don’t be put off if medication that helps you has a bad reputation from people that don’t understand, or have had bad experiences on it. For example, as well as a couple other medications for other ailments, I take Lithium and an antidepressant, Venlafaxine. Now Lithium is very well known, and it’s been around for a long time. It’s also very cheap, and has been shown to be incredibly beneficial at treating bipolar, and also significantly reducing suicidal behaviour. It also has a number of side effects, and can cause serious damage if not monitored closely (kidney and thyroid damage or even failure). Now I admit, I was scared off lithium initially. I was offered it a few years ago and I was pretty much of the mindset that I would try anything but that. This was, in part, due to the stigma, and to the research project I had done at university on it. (I do wonder what might have been different if I had tried lithium when I was first offered the chance, but there’s nothing that can be gained from wondering “what if?”). So whilst I heartily recommend researching medications before you decide to take them, don’t be so informed that you scare yourself away from something that could potentially really help you.

I think a good rule of thumb is if the side effects make you feel worse than the illness itself, they’re probably not for you. However, it is often very difficult for the ill person to notice if they are feeling better, as we (ill people) have a tendency to see and focus on the bad far more than the good. I had someone tell me they could tell exactly when my medication was changed to my current ones because I was so much better. I hadn’t realised it was such a big difference so their perspective was really helpful.

• “Other”

Please notice I’ve put this in little “air quotes” as these are not prescribed treatments, but anecdotally, there’s sometimes things we can do for ourselves to encourage longer times in remission.

While many people with bipolar and other mental health illnesses self-medicate using alcohol, illicit drugs etc., I can’t say I can recommend either of these things. What I can say is that it’s completely understandable why people go down this route. But I’m going to try and focus on some other ways I/people/you can use to try and ease the struggle of mental ill-health.

It helps to have things that you can throw yourself into when you start feeling the first signs of depression or (hypo)mania. Depending on your personality, these things will differ hugely, and I have different activities to help with different directions of mood. Colouring helps with creeping manic symptoms, as it gives me something to completely focus on, and I can jump to any number of different books, colour schemes, pages, but it often helps my head slow down eventually. When I’m feeling the beginnings of a downward mood, I try and go skating/go to derby practice (if physical health allows), or go for a walk, or go throw my phone folder of silly pictures I’ve saved and send them to close friends to strike up a conversation. Basically, anything to stay out of my head/bad thoughts, something to stop the downward spiral before it fully starts. If I’m veering towards the manic side however, these actions would be things to avoid, as sport/exercise is actually a big thing I’ve noticed sends me into hypomania (mania, before my medication).

 

I’m sure a lot of people will see the things I’ve listed and think it’s twee or useless things they’ve been told before, but all I can say is that they’ve helped me. I think roller derby has been helpful for me as the continuity of practice and knowing my attendance is monitored helps me regularly go out and mix with people, and skate/do physical activity when possible. Structure is hugely important to me, so a hobby with classes or regular practices was a big bonus and ones of the reasons I stick with the hobby even when it seems “crazy” for someone like me to do.

 

Obviously nothing in this section is actually ‘treatment’ per se, but I think living with mental illness means learning how to treat you. You have probably heard of self-care recently, but no one really says what it is. And that’s often because it varies person to person. So think, what makes you calm, what do you need when everything is getting on top of you? Think about this, and try and stick to this self-care plan, paying particular attention to it when life throws a curveball at you.

 

There is just one of these blog posts left in this series, but I have another one I’ve been working on to post before I finish the last of my bipolar posts.

 

Let me know in the comments if you think I’ve missed something from my treatment ideas, or if you have another PoV on the topic. Always love to hear from you!

Bipolar & Me: Part 2. Symptoms

So onto the main bit of these posts: bipolar, what it is and almost as important, what it isn’t.

Let’s start with some definitions, cause who doesn’t love those:

“Bipolar disorder, formerly known as manic depression, is a condition that affects your moods, which can swing from one extreme to another. If you have bipolar disorder, you will have periods or episodes of:

• Depression – where you feel very low and lethargic.
• Mania – where you feel very high and overactive (less severe mania is known as hypomania).”

This is taken directly from the NHS page so you’d expect it to be pretty accurate.

And yes, you do have to display episodes of depression and mania to a psychiatrist in order to be formally diagnosed (which is part of the reason diagnosis takes so long; you very rarely go to your appointments when you’re manic because hell, you’re not sick, you’re better than fine, you’re amazing, the most healthy person! Only sick people go to psychiatrists etc etc). So often your psych will only see the depressed or possibly mixed states (I’ll explain that last part later). Which means you just get antidepressants and gosh, just giving antidepressants to bipolar people gets an interesting reaction, as it often send them straight to manic. Not good but it’s often the fastest way to be diagnosed, aside from having an extreme episode of mania where you end up in hospital. For full disclosure, I went the former route. My psych saw me in depression, then in mania, then a long period of mixed state.

I’m using these terms, depression, mania, mixed…but what do they mean, really? Read on, dear readers, read on.
Depression

Biggest misconception about depression: it is just sadness. How many times have you heard (as a depressed person) things like: “everyone gets sad, deal with it, cheer up, focus on the good things, it could be worse, what do you have to be so sad about?” etc. I won’t even go into how much I hate the phrase “man up”, as that’s a whole different blog post waiting to happen.

 

The “Black Dog”, as coined by Winston Churchill (and taken by Ruby Wax to create the Black Dog Tribe online) is very different to sadness. Much has been said recently about depression and there’s a lot of writing out there that is superior to my own. It is not just sadness, it is so many things and yet nothing at all. When my depression is at its worst, there is nothing, there is an empty void where thoughts should be. That void seems to suck my energy, my interests in everything, my love for my loved ones. I feel nothing, I am nothing. This is actually when I have done the most harm to myself. Sometimes just trying to feel something, sometimes just because if I am nothing then why not hurt myself, damage things around me? Nothing matters. When that emptiness starts to ebb, that’s when sadness, anger, hatred, paranoia, all those fun things happen. It hurts. It’s like something has cracked deep inside and you can’t fix it and you can barely move because everything hurts and you know you deserve this because you are an awful person. Then there’s the searing guilt that you shouldn’t be feeling this way, so many people have it worse than you, what do you even have to be depressed about, which you take as proof of how weak and awful you are. That’s when self-harm as punishment, as release of the pain you’re feeling can come in. I also feel intensely hopeless about everything, and I can’t rid my head of suicidal ideations/plans. You feel so damn tired, but it’s hard to sleep when you need to and even harder to get up when you need to, like there’s a weight pressing down making it so much harder just to move, get out of bed, wash, eat, work, anything. Again, this is my experience, I know some people overeat in their depression which is a way of seeking comfort (as many comfort foods, like chocolate for example, release hormones like oxytocin, making you feel a little better, for a short while. Until you feel bad that you used food as a crutch again, and that feeds the depression, and you feed yourself, and it’s a near endless awful cycle. I’ll talk about coping mechanisms more in part 3). I was like that when I was younger; I swung the other way in my teens when I struggled to eat anything due to feeling so low.

 

So you know, not a barrel of laughs. You lose interest in most things, you (try to) isolate yourself; you have little-to-no concentration so finding comfort in books, even TV and video games is difficult. This is just a short look into depression, and no two depressed people will experience it alike. So this won’t apply or ring true to everyone, but it’s how it has been for me.

On to the flip side!

 

Mania (and hypomania)

 

Hypomania is the “light” or lesser version of mania. This doesn’t mean that it’s easy to deal with by any means but people don’t get to the extreme end of symptoms when experience hypomania, and often, it doesn’t last as long as full manic episodes. Hypomania can be the only type of mania a bipolar patient gets (for example if they have Bipolar II, or if they have rapid cycling bipolar) or it could be the stage before a person reaches mania, so sometimes with the right intervention, full mania can be avoided.

 

Symptoms of hypomania are similar to those of mania. These include (but are not limited to):

• Excess energy.
• Little need for sleep.
• Unusual exhilaration.
• Excessive irritability, excitement or aggression.
• Increased confidence/self-esteem.
• Very fast speech and thoughts that others find hard (sometimes impossible to follow).
• Unable to concentrate on one thing, easily distracted by their latest idea (an example: I once had made several drinks, in different parts of my flat, had half done dish washing, university work “done”, new art projects started, and new guitar tab music up on my laptop to do. All at the same time).
• Abnormal hypersexuality.
• Increased outlandish and uncharacterised risk taking.

For it to count as a hypomanic episode, there must be a sustained period of these symptoms during the entire episode. The emotions experienced are often unconnected to anything going on in the person’s life, though a person can be tipped into an episode by life events/stressors.

The main difference between mania and hypomania is the person does not experience psychosis or related symptoms, such as hallucinations, delusions, severe paranoia etc.

Mania, as I mentioned is similar. You again experience the excessive energy, along with things like extravagant and impulsive behaviour, excess/uncontrolled/impulsive spending, hallucinations (auditory/visual). To class as mania it must last at least a week and have a sustained abnormally elevated/expansive/irritable mood. It normally causes problems in the person’s social and work life, and can often (especially if they are not taking their medication) will lead to hospitalisation.

I guess what I would like to emphasise about mania is the common misconception that these periods are “fun”. I have myself sometimes felt so desperately low that I have stopped taking my medication in the hopes of eliciting a high episode, because surely it has to be better than depression right? Not necessarily (shockingly, depressed Kathy is not great at thinking rationally about this).

For me personally, mania is terrifying. I get paranoid, I have hallucinations. I don’t enjoy the excess creativity that is often spoken about bipolar sufferers. Admittedly, sometimes I *think* I’m a creative genius who can be working on three different creative projects at once and they are all breathtaking but that is rare and, in my case, definitely not true. I used to think mania was fun, at the beginning, but the effects are what truly get to me, and are why I hate it so much. My ex would tell me that it scared her when I was like it, I’m quick to anger frequently because everyone else is moving too slow, can’t know what I’m thinking, doesn’t understand my ideas and “brilliance” (usually because it’s unintelligible garbage). I’ve come close to cheating, because my energy just fuels all the awful impulses and urges in my head. I’m lucky in that so far, I’ve managed to catch myself before anything happens, but from reading other experiences I know that it does sadly happen (especially when you are untreated).

Finally:

Mixed State

It sort of is what it sounds like, state that is a mix of manic and depressive symptoms. So you could have the energy and racing thoughts, but the depressive thoughts, suicidal ideation etc. It is an intensely uncomfortable state to be in, to be excitable and energetic yet at the same time, apathetic and closed off and alone. I spend more time than I’d like to admit in this state I think, especially since my current medication mostly staves off the full-blown manic episodes (though life sometimes happens and pushes me there, but it’s a work in progress to try and reduce this). I also get incredibly anxious in this state, heart racing, indecisive, racing thoughts, but all about the negative potential possibilities. Makes it incredibly difficult to concentrate or sleep. The latter is important to try and get as many people with bipolar are hugely sensitive to sleep change (an almost sure fire way for me to go high is lack of sleep for a night or two).

There’s more I wanted to go into but this post is already longer than I’d planned. I hope this has provided a more rounded idea of what people with bipolar go through, it’s not like what I’d seen in the movies anyway.

As I will keep repeating, this is just my experience of the illness. If you disagree or experience episodes differently, I am not trying to dismiss you! We all experience the illness differently; feel free to comment on if you agree/disagree/think I’ve missed out something in the comments 🙂

Bipolar & Me: Part 1. Introduction

OK so this is not easy for me to do,  but I’ve been wanting to do it for a while. So I’m going to write a series of posts about mental health. My mental health. Specifically what mental health struggles I have.

First things first: surprise, surprise, I have bipolar disorder (or “manic depression”).

You may have seen Stephen Fry’s latest documentary on BBC “The Not-So Secret Life of the Manic Depressive: 10 Years On”. I watched the first documentary 10 years ago, before my own diagnosis. I’m trying to hunt it down to watch it again to see if my perspective has changed since receiving the diagnosis. From what I can recall, it seemed the follow up documentary was more of a depressing watch, there didn’t seem to be much hope portrayed for any of the bipolar sufferers depicted, including Stephen Fry himself. While I have only been officially diagnosed myself since ~March last year, I thought I would try and offer my own personal perspective on the diagnosis process, the medication, and the resources I’ve found available to me through a series of posts.

I have to admit, I struggled watching the most recent documentary. I found that a lot of what was said resonated with me and I understand that it needed to show the truth of living with this disorder. However, I think it really could have benefitted from showing just one person coping, one person managing their condition to balance out the rest of the quite depressing situations. I am by no means in control of my illness as it stands, and I’m still trying to work out how to manage it with my CFS/ME. It is exhausting. But I have found a medication that works for me, which is phenomenally beneficial (I will go into this in a later post). I’m able to stay more balanced and when I do have episodes, my lows are less low, my highs less high. I am considerably safer than I used to be. I am also fortunate in that it doesn’t make me numb, it doesn’t make me a zombie. I am still working full-time in a fast, stressful industry that I love. I have blogged before how I am so lucky because my employer is so patient and flexible in how they let me work.

I wish others with ME, others with bipolar could be able to do this. Many with these conditions have to work part-time, if they can work at all. I reiterate: I am incredibly lucky, and it is something I’m going to have to keep fighting for every day of my life to keep doing. But I am doing it. And I think that someone newly diagnosed with this illness would benefit from knowing that it can be possible. Hence these posts on “Bipolar and me”.

See Part 2 for my thoughts on the illness itself, dispelling some common misconceptions and just trying to fill you in on what living with bipolar really means.

“Book” Review: Nimona by Noelle Stevenson

Finally, another book review! I decided to have a change and write about a comic/graphic novel, since I have been reading a LOT of these recently.

Before I get into the main review, I should say that I’m a huge comic fan. Web comics, paper comics, Image, Marvel (a tiny amount of DC). I’ve become almost as addicted to them as normal books. Which is impressive, as I haven’t been into them for nearly as long. I have noticed that there are few women involved in the comic world so when I found something that sounded right up my street in terms of genre and humour, the fact that it was written and illustrated by a woman gave it an extra boost for me.

Apologies. I’m getting ahead of myself.

Nimona is a standalone (for now) book based on the web comic Noelle Stevenson made of the same name. It’s rare I find many standalone comics that really grab me as they usually need to be a series to build up the character background to pull me in. This isn’t the case with this book, and the characters have stayed with me long after finishing.

To sum up the story quickly, without giving the plot away: Nimona is about a young woman of that name who declares herself side-kick to an evil villain Lord Ballister Blackheart. She wasn’t exactly what he had in mind for a side-kick but considering she can shapeshift, he decides to give her a chance. I mean…who wouldn’t? Their mission: to cause havoc and show the secrets of Sir Ambrosius Goldenloin and the Institution he works for.

Nimona is completely (perhaps overly?) enthused about his vendetta, and is always trying to push his schemes further than he actually ever planned. Both characters have interesting pasts that have led them to where they are, and neither of them expects what they find out about the other.

The story is compelling, funny, gripping and incredibly silly but has the ability to pull hard at your heartstrings when you least expect it. I’m reluctant to say too much more about the plot itself as a lot of the magic of the story is in the surprises. But the things I particularly enjoyed are:

• Nimona herself. She’s loveable, unpredictable, unnerving, all at the same time.
• The combination of magic and sci-fi makes for an interesting story as it can combine devices and tropes from both genres, whilst adding some new ideas to them too.
• The morality of the characters. It’s fairly common now to have characters that are various shades of grey (forgive the phrase, I’m in no way endorsing that book) and this is something that Noelle manages here. The question of who is evil, what is evil, who is good and how do you tell the difference is explored in the characters of the story.
• The art of the comic. The art style is typical of Noelle if you are familiar with the Lumberjanes (which if you aren’t familiar with, go! Seek it out! You won’t be disappointed). It’s almost sketch-like in style, but it is clear and distinctive.

I have to include part of the blurb on the back of the book, as I don’t think I can describe it any better (which is terrible for a writer to admit):

“Nemeses!
Dragons!
Science!
Symbolism!”

Hopefully, I’ve given you enough detail to convince you to read this fabulous graphic novel, you absolutely won’t regret it. If you read it and are desperate for more, as mentioned above, read her Lumberjanes series, and I can also recommend a series by Kurtis J. Wiebe called Rat Queens. I am attempting to work on a similar review for that but as you might have noticed, I’m somewhat erratic with my posts, so go read it now if you like humour, battles, women being kick-ass, and mercenaries.

Next post is going to be another ‘serious’ one, so I hope this has made a nice change of pace.

Write soon 🙂

Working 9-5?

I found transitioning from university to working life quite difficult. I couldn’t take regular naps in the day between lectures, I lost the support network the university provided for me to help me get to and from places.
Now this is just my experience and I can’t speak for everyone. But working with ME and bipolar disorder is difficult. There are many factors I need to take into account every day, keep my exertion to a certain level so I don’t trigger a flare up in my ME, make sure I keep track of my mood so that I avoid any potential stress triggers, if possible…the list goes on.
So I’m going to go through the top 3 most important things in working with chronic health conditions.
1. Place of work is crucial.
Now I have had three jobs since graduation. The first one, I was let go. I do not necessarily blame them; I was very ill and trying to cope by pushing myself to my limit and beyond, just to get by. I did not know how to do any better; I didn’t know what to ask for to get the help I needed. But on their part, they did not understand my illnesses or how they could affect my work.
My current job is wonderful. Yes I am still somewhat behind my colleagues here but they have researched and understood my background, what I’m attempting to deal with and there have been two significant deaths close to me which have thrown me. I hate to sound like I’m making excuses but my work understand that I haven’t had the chance to be at the same level as my colleagues because the playing field wasn’t even when I started.
What I am trying to say is that the workplace is important. The way you are managed, how they listen and try to understand your needs and work to them can make ALL the difference to your success at work.
(Of course this also relies on you being open with your place of work about your illness. Maybe this is number 1.5 on the list. Be open and honest or they can’t help you. Occupational health exist to keep you in work if possible, to change circumstances to allow everyone to be on the same playing field).
2. Find your limits
Now if anyone reading this hasn’t heard of the spoon theory, go and google it now, otherwise this will sound a bit odd.
I can tell in the mornings normally how many spoons I have for the day. At my old job and at the start of my current job, I would work as hard as possible which meant I had no spoons left to do much of anything else. I’d go straight to bed after work and sleep for much of the weekend. Sometimes that happens now but what I now do is if I know I have fewer spoons, I work with that. If I have limited spoons it makes more sense for me to work from home rather than expend spoons getting ready to leave the house, do the drive, be around the bright lights and the noises of the office (all things that wear me down). Working from home is something I am incredibly lucky to be able to do, and if you are a spoonie like me, see if there’s a chance to do it too. It has kept me safe from driving when I’m not fully ‘with it’ and it means I get more work done because I can use my limited energy on work, not the things mentioned above.
Finding you limits is the most difficult thing and with many chronic illnesses they can change day to day. But you have to try and find them as it will make a huge difference to your working and personal life.
3. Use your annual leave
This might sound obvious but if you’re anything like me you like to put your best effort in at work and that means dedication. And sometimes you can get so wrapped up in work that you forget about breaks. Or maybe you use your annual leave to go on holiday and you get exhausted doing that (yay holidays making you need a holiday just to recover). What I found most useful this year was using some of my annual leave to just rest. I slept and relaxed and I did minimal tasks, nothing stressful. I think I just about managed a small bike ride with a nap straight after. This meant I was recharged for going back to work instead of getting more and more drained as the weeks went on. I still have times when I have to sleep when I get in from work but it’s not pleasant to lose every evening that way, so if you can block off a couple days here and there to catch up on some much needed rest, I found it did me a world of good.
Note: if you have fully burnt yourself out and you are sick DON’T use your annual leave, take it as sick leave. These are very different things. I had to do it, there’s no shame in it. With a lot of invisible and (visible illnesses I’m sure), there’s sometimes nothing you can do to prevent a flare up. And trying to push through that *every time* only made me worse, and of course my work suffered too.
So that’s my thoughts about trying to work with chronic illnesses. It was more geared towards my ME experiences but I think it applies to mental illness too. I know my bipolar has had a severe impact in my work experience and I am very grateful that I have such an understanding employer to deal with how erratic I was.
If you take only one thing away from this: be honest with your employer. They might not all be great about it but I believe most just want to get the best out of their employees and that can’t happen if you’re struggling by, trying to hide your condition. Be honest, find your limit, and use your breaks.

Can you think of anything else I’ve missed? What have you found is useful at work when living with or without a chronic illness? I’m always eager to hear your thoughts.