Collaboration

In the past, I've tended to avoid collaborative projects. Or at least, I have since I've been sick. I worry about letting people down if I'm not able to complete tasks because of my health. I know that it's not entirely a rational worry, as in the past when I have worked on joint projects, I've tended to be the most reliable one in the group, but still the fear persists. That's probably also the reason why I'm self-employed rather than working for other people. When you're on your own, it doesn't matter if you don't complete a project - you just take a rest and start a new one when you're ready.

But there's only so much you can do on your own, especially when it comes to creative projects. As a playwright in particular, there's a point where you're probably going to need a director and you're definitely going to need some actors - the world only needs so many one-woman shows.

At a certain point, you've got to start collaborating with other people to fill skill gaps, make bigger projects, and to challenge and expand your own abilities. The original problem remains, though. What happens if you get sick? Or in the case of chronic illness, run out of spoons? 

This year, I've been lucky enough to have been offered the opportunity to work on several cool projects - a theatre show called The Memory Plays, a short story anthology called Blood From a Stone: A twisted Villains Anthology, and a shared launch for my and another author's new children's books. My health has been reasonably good lately, though still pretty up and down. Through trial, error and sheer stubbornness, I've managed to make it work with balancing several projects and managing my health, but it hasn't always been easy. Along the way I learnt a few things, which I thought might be useful for others also wanting to work collaboratively.

1) One project at a time

Now, I didn't set out to work on several projects at once, it just kind of worked out that way. The thing is, projects have a way of growing and sometimes end up being a lot more work than you originally thought they would. Don't commit to a second (or third or fourth) project until you're certain of the scope of the one you're working on.

2) Share all information

Before starting working on The Memory Plays project, I wasn't very familiar with Google Docs. In fact, one of the other writers had to walk me through it with child-friendly level instructions. It has been a godsend for my anxiety levels though. One of the things I worried about going into the project was: what would happen if I got really unwell and ended up in hospital? Knowing the rest of the crew had access to the same information, documents and emails I did helped a lot, as even if I was too unwell to do any kind of hand over, they would know where to look to pick up the pieces of what I'd been working on.

3) No matter how busy, take time out if you're unwell

I've had some problems with my blood pressure lately, which, when it's bad, means my head feels like it's going to explode if I lift it and I pass out frequently. When I had bad episodes, at first I tried to drag my laptop into bed with me, to be able to keep working, but the work I did in this state was of pretty poor quality, and I ended up redoing it later. Going to sleep for a few hours or taking a day or two off meant I worked quicker and produced better quality work when I did get to it.

4) If people don't hear your needs, say them louder

I knew some of the people I've been working with at the start of these projects, but not terribly well. They knew I had an illness, but not really how it affected me. Because I look well, it sometimes made it difficult to get them to understand that there are some things I just can't do. For example, it took a while for them to realise that I couldn't meet in places that are poorly accessible, because on any given day I may not be able to walk up stairs. It feels awkward to keep saying "no" to meeting places, and I did start to worry they thought I was being difficult, but it's just not worth using up all your spoons on getting to places. If you keep saying no, eventually they'll get it and start to factor accessibility in automatically. It may feel uncomfortable, but the next disabled person they meet will thank you for it.

Overall, I'm really glad I've had the chance to work on these projects. I kind of wish they hadn't all fallen at the same time, as it's been pretty rough on the spoons, but even that has been a real confidence boost. No matter what my health is doing, I know now I can still contribute and be reliable in shared work. I'm also really proud of how the projects have turned out.

If you'd like to know more about the Blood From a Stone Anthology, and The Memory Plays, scroll down for more details, otherwise I'll catch you next time. 

Thanks for Reading,

Little Miss Autoimmune 

The Memory Plays

30th Oct - 3rd Nov at BATS Theatre (Wellington, New Zealand). 

One woman relives an argument with an old friend. Another spirals into questions about her strangely vivid dreams. A third can’t get over an ex, much to the chagrin of everyone who knows her.

All three are stuck in the past, and all three need to let go or risk damaging their present lives in the process.

Three plays spanning three decades jam-packed with drama, intrigue and comedy, The Memory Plays is an original anthology show featuring new work from three writers with vividly contrasting styles.

Book online or call 04 802 4175

Blood From A Stone A Twisted Villains Anthology

Villains are never born—they’re made—and their stories are twisted by those that call themselves heroes until there is nothing left but darkness and lies.

This collection of eight twisted villain tales will leave you second-guessing everything you thought you knew about the evil characters we all love to hate.

Nothing is as it appears. Whose side will you take?

Launches 30th October.

Preorder in ebook or paperback today.

Yes, You Still Have to Count Spoons.

I’ve been having a lot of trouble counting spoons lately. Usually when I start to have problems with this it’s because I’m feeling really awful, and scraping together enough spoons to do even the simplest tasks is hard. This time, it’s kind of the opposite problem. I’ve been really well lately, and when I feel good, I tend to forget I still have restrictions on what I can do.

Sometimes this isn’t such a bad thing. It’s okay to test the limits a bit – do a bit more, and if it turns out it’s too much, scale things back. But something in me seems to have lost the plot a bit at the moment, and I’ve been booking in things that would be hard even for a healthy person to do, as if I think I’ve become superwoman. I find myself thinking “It’ll be fine! I have way more spoons now!” No. No, actually I have some more spoons now. Not enough to do everything and certainly not enough to do 15 hour days (what was I thinking!)

Fortunately every time I’ve overbooked myself recently I’ve realised it’s not going to work, and managed to reschedule things without letting anyone down, but it’s caused a fair bit of anxiety for me in the meantime. As with most anxiety, there were many factors involved, including that I was late on getting my B12 shot this month, but at the point where I had to simply walk out on something because I knew I was about to have a panic attack, I realised I had to get things better under control. So, I’m learning my lesson and getting better at carefully planning what I take on so I don’t keep putting myself in that position. It’s made me wonder, though, what’s brought on this sudden inability to spoon-count for me. Part of it is that’s there’s always an adjustment period to having more or less energy, as you figure out exactly what you can and can’t do now, but I feel like there’s more going on here.

Well, the obvious thing is that there are lots of things I want and need to do at the moment. I’ve been given lots of awesome opportunities lately, and I’m loathe to turn them down, but that does of course have to be balanced against the commitments and responsibilites I already have. Sometimes making those decisions can be really hard. Saying “no” can mean letting someone else down, missing out on something you really want to do, or both.

The other thing that’s been playing on my mind a lot lately is a feeling of being a “fraud”. When I’m feeling well, it seems less valid to say no to things because of my health. I’ve had times recently where I’ve said no to something then thought “Wait, could I have done that? Is it true that I’m not well enough? Am I actually even still sick?” After getting my blood test results back a few days ago, I can say yes, I am definitely still sick (nothing to worry about – just quite clearly showed a flare) but there’s a niggly part of my brain that makes me start to doubt myself.

I know very well that if this was a friend rather than me, I’d be reminding them that invisible illnesses aren’t always consistent and just because you can do something one day doesn’t mean you can do it the next. None of that means it’s not real. I also need to remind myself that part of the reason I’ve been well lately is because I’d been doing a good job of taking care of myself. If I start taking on too much, and let the healthy eating slip (guilty) don’t exercise enough (also guilty) and forget to take my meds on time (yep, done that a few times too lately) I’m not going to stay well. I also need to remember that I’m not a fricken super hero. If it would be a lot for a healthy person to do, then there’s no reason for me, a non-healthy person, to feel guilty that I can’t.

So, I’m going to do better at counting spoons, and try giving myself a break and stop accusing myself of being a fraud. I’m also going to forgive myself when I fail at times, take on too much, and have to spend a day curled up on the couch because I’m too tired to do anything else. Sometimes that too is just a part of this process and gettting mad at myself is quite frankly a waste of spoons.

Thanks for reading,
Little Miss Autoimmune

(Back to) Invisible Illness

I’ve talked before about the “but you don’t look sick” aspect of invisible illnesses, but I’m not sure I totally got it myself. When I feel awful, I tend to assume I look awful, even if that’s not what other people are telling me.

The other day my friend took this photo for me to use as my author pic, on my publishers website. When I saw it, I suddenly got what people meant. I don’t look sick. If I saw this person on the street, serious illness would not be the first thing that came to mind.

What you can’t see in this photo is that we had to delay taking it, because a week earlier my right eye had swollen completely shut. You can’t see that only a couple of days before, my face was covered in sores, some of which had turned into ulcers and my nose wouldn’t stop bleeding. You can’t see that this was one of the first times in months I’d been able to wear my hair out, because it had been falling out. You can’t see the crutch on the ground beside me or the gloves and coat I normally wear all the time to keep raynaud’s at bay. You can’t see that the bracelets around my wrist are actually not one, but two, medical alert bracelets, and you can’t see that I’m wearing fluffy bedsocks over my tights because my toes kept turning blue that morning.

I weighed up whether to post this. I like the way I look in this photo. I did not like my swollen-eyed scabby face look, so much so that the only person I let see me like that was my Dad. Of course I don’t want to look sick, but I do want people to understand that even though I don’t always look sick, I am.

World Autoimmune Arthritis Day’s video Invisible makes this point much better than I ever could. Check out the video here, or find World Autoimmune Arthritis Day on facebook here.

Thanks

Little Miss Autoimmune

(Not-so) Invisible Illness

The other day I was getting on the bus (to ride the three stops from the shop to my house because I was too tired to walk) when the bus driver leapt up and grabbed me because he thought I was falling over. It was quite alarming, because I wasn’t falling over and had no idea what he was doing, but he meant well and it was nice to know that, had I been falling over, he would have been willing to help. After realising his mistake, he then took my card and tagged on for me and waited until I’d sat down before starting off. When I was getting off the bus (three stops later) he looked worried and asked if I had far to walk from there. I didn’t – the bus stop is just around the corner from home – but again, it was nice of him to check (not really sure what he was going to do if I did have far to go though?)

I was thinking about all this later. Part of me was happy to know that there are nice people out there willing to help out someone they feel is in need, but the other part of me felt sad and I wasn’t quite sure why. I, like most people with invisible illnesses, am far more used to the old chestnut: “But you don’t look sick!” Or when they see my crutch: “So what have you done to yourself?” I’m so used to people not believing me, or simply not realising, that it felt really strange to have someone notice I was struggling just by looking at me.

As I’ve got sicker, it’s become far more visible. While I’ve walked with a crutch for a long time, it’s now quite obvious that I really need it. My legs don’t always do what they’re told, and get a bit wonky-donkey when I’m walking. Tremors are hard to hide – in particular the new fun symptom of my head bobbing – and of course rashes, being pale/green and weight-loss tend to be fairly noticeable.

After a few minutes of moping over all this, I realised I didn’t care!

A few people have looked at me strangely when my head starts bobbing, but once I explain that I’m not really emphatically agreeing with them they don’t mention it again. A few days ago, I was stressing about going out to dinner because my tremors were really bad. Then I realised, no-one is going to laugh at me (and if they did, they certainly wouldn’t be the kind of person I want to hang out with!)

Being sick – invisible or not-so-much – is hard, and the majority of people get that. The ones who don’t, either just have no idea and will probably change their tune once they understand a little more about invisible illnesses. The ones who do understand about invisible illnesses and still don’t get it? Well, maybe I just don’t hang out with them :-)

Little Miss Autoimmune