Wednesday, March 11, 2020

Spoon Dominoes

Imagine contains: A bundle of vintage spoons, positioned as if falling one after the other to the sideMy shoes fell apart the other day, and by fall apart I mean completely fell apart, unfixable, unwearable. It’s not really surprising – I’ve been wearing them for (at a guess) 15 years now, and they’ve been threatening to fall apart for the last six months or so. Added to that, that’s pretty much the state of every shoe in my house, except for the ones I turned out to be allergic to but haven’t yet had the energy to do anything about getting rid of.

I haven’t gone shoe shopping, because it’s difficult to find shoes that are both comfortable on arthritic feet, and that I’m not allergic to, and I’ve taken on too many things at the moment, so just didn’t have the spoons to spare on anything else.

So at the weekend, after my shoes fell apart, I wore a pair that I’m mildly allergic to, and that are slightly too tight to be comfortable, to walk to work, and then to stand all day during my shift, and then to walk home again. My feet hurt all day, but my feet always hurt, so I didn’t think anything of it, until I got home and found my foot was so thoroughly covered in dried blood, I couldn’t get my sock off.

And while the wound on my foot was small, lupus makes me heal slowly, and what started out as a blister is now an ulcer. And then the immunocompromising part of my medications joined the party, and last night my toe became alarmingly hot, red and pus covered, to the point I started wondering if I would be able to balance if it got amputated.

And suddenly, what started out as a funny moment, when my shoe fell apart in my hand, had become a rather gross and painful problem. And I still haven’t bought new shoes, because now it’s too painful to walk, let alone try on footwear.

This will all be fine, I’m off to the doctor this afternoon, and I’m sure it will all be pretty simple to get under control, but it did make me think about the domino effect that often comes into play with chronic illnesses.

It’s often just slightly harder than normal to do a task, and you have slightly less energy to do it with, but the consequences of not doing it are slightly worse than they would be for a healthy person, and the consequences of those consequences are slightly more dramatic, and suddenly all those “slightlys” have built up into a much more serious problem than it ever would have been for someone able bodied.

When people think of chronic illness or disability, I think they mostly picture the big stuff – the not being able to get out of bed, or move around freely, but it’s often the everyday, little things that build up and make illness hard. The big stuff – the falls, the hospital admissions – you just go into survival mode and get through it. It’s the constant nature of the everyday difficulties that wear you down with their unrelenting nature, making everything just that tiny bit worse.

I don’t know what the solution to this is, but I do know that next time, I’ll find the goddamn spoons to buy some shoes.

Thanks for reading,
Little Miss Autoimmune

Monday, January 6, 2020

Sorry is a Sometimes Word

A few years ago, I wrote a piece about apologising in relation to my illnesses, the unintentional emotional manipulation that can accompany apologies, and why often, thanking people for their support is a much more appropriate response. In the time since then, I have gotten a lot better at saying “thank you” rather than “sorry” when someone helps me … but I still apologise a lot in other circumstances.

Recently, someone told me off for this. His reasoning – if you are apologising constantly, letting it become nothing more than a habit, then it loses authenticity. He asked what I would then do if I’d really done something wrong, and needed to give a genuine apology?

Cue moment of existential crisis as I tried to work out whether apologising to someone who’s visibly annoyed at you for apologising will make the situation better or worse and vaguely considered option three – just slowly sliding under the table while humming Tracy Chapman.

Now to be fair, I had just issued about fifteen apologies in the space of a few minutes, and once I managed to stifle my automatic need to give fifteen more for the awkwardness, I could see where he was coming from. This wasn’t a perspective I had considered before, but I’ve certainly had my share of relationships and friendships in the past where the apologies were frequent, but the changes of behaviour were notably absent, until the word “sorry” started to leave a pit in my stomach.

I am genuinely feeling guilt when I’m saying I’m sorry, and there is an authentic desire to make the other person feel better, including examining and changing my own behaviour where needed. However, I’m often apologising in situations where my guilt is unwarranted, or the perceived slight exists only in my mind.

So that leaves me with two questions:

Why am I apologising so much, and is it a problem?

At the time, the reason I gave is that I’m tending to take responsibility for things which aren’t my fault, including other people’s feelings or discomfort. Illness and disability do make a lot of people uncomfortable, and I know my tendency to start stories with things like “So this one time part of my back died for no reason… it’s okay, it grew back eventually…” do not help with this. While my twisted sense of humour, and ability to find the funny side of everything, is something I love about myself, it is also something I feel the need to apologise for when I see it make people squirm.

When I stop to consider it, I think there are also a few other contributing factors here. Of course, anxiety and depression probably play a part, particularly in the instance above as I had been going through an unusually bad mental health patch at the time, after being really well on that front since I got Bindi.

I do notice that when I’m in a good place, the apologies are noticeably reduced, or at the very least, the reasons behind them are more logical. But when I’m not sleeping and therefore slipping into a darker headspace, it can start to feel like I need to apologise for my very existence, let alone anything else. The nervous energy and overthinking aspect of anxiety doesn’t help with this either, as if you think about anything for too long you can convince yourself it’s 1) a problem and 2) your fault. There can also be an element of “duck and cover” to interacting with new people when you have PTSD (or other forms of anxiety) until you figure out whether they are safe, and you can relax with them. Even mild irritation from a stranger can feel like it could be a threat, and so appeasing the person with pre-emptive apologies becomes a part of self-preservation.

Which leads into the question of whether it’s a problem.

Sociologist, Maja Jovanovicbelieves that unnecessary apologies hurt us, making us smaller and weakening what we have to say. I have started to notice there is a level of self-fulfilling prophecy to this, as rather than appeasing my guilt, apologising lots makes me feel even more like there is something wrong with me that I must apologise for. I notice my body language changing when I say “I’m sorry”, shrinking in, as if I am diminished by my mistakes, illnesses and flaws – something I whole-heartedly do not believe.

What I like to call the “Labyrinth Effect” also starts to come into play. If you treat someone or something as if they are a threat, you associate them with that fear and they ultimately become more intimidating to you. In the words of David Bowie’s Jareth:

“You have cowered before me, and I was frightening.”

Breaking the Habit

All of this has made me question the effect apologies are having on my own self-esteem, the people around me, and the way I interact with both. So, I have been trying to break my apology habit, but it has led to a strange development and the discovery of one more possible reason why I apologise so much.

I decided to start small, addressing one particular form of apologies. I made a point of not apologising if someone bumped into me, or in some other way caused a disruption, instead simply accepting their apology and moving on with my day. I figured this would be an easy one to address, as I know I’m not actually at fault in these situations; I’m just apologising because… New Zealand.

But here’s where it gets interesting.

On multiple occasions, a stranger bumped into me and, when I said nothing, they came out with comments along the lines of “Oh, that’s okay, love”. I had kept my pledge to myself not to apologise, but despite this, strangers were accepting apologies I hadn’t given and didn’t owe. And not just one or two people, this happened on multiple occasions.

Now, I don’t entirely understand what’s happening here, but my best guess is that people are seeing Bindi and my dark sunglasses, assuming I’m blind and therefore deciding the accident must be my fault, despite evidence to the contrary.

I have to admit, after the first few times this happened, I did start to wonder if I was somehow causing these accidents, and you may well be wondering why so many people bump into me. I guess the truth lies somewhere in between. If someone is looking at their phone or walking backwards away from a conversation still focused on their companion, an able-bodied person may be able to quickly dodge out of the way, but it’s trickier for me when I’m sometimes a little unsteady on my feet and have a dog (and sometimes walking stick) to negotiate. But regardless of my speed, if you’re not looking, it’s not the responsibility of anyone else on the street to get out of your way, and certainly not their fault if you crash into them. In fact, in many of these instances, I was standing completely still, to the side of the pavement out of the way, when the person walked into me.


This did make me consider the role expectation plays in excessive apologies. In these instances, it was very clear an apology was expected from me, whether or not I genuinely owed one. But I think it extends beyond this. Not to turn this into an norms vs crips argument, but I do think there is a level of expectation that disabled and chronically ill people will behave in certain ways, one of those being apologising for the impact on able-bodied people’s desire to do things in inaccessible ways.

Asking for any kind of access assistance – even if it’s a legal right – sometimes leads you to being made to feel like an inconvenience, as if your presence is only allowed by obligation, but that really you are not wanted or welcome. Apologising can appease some of this, allowing for a more friendly and less awkward environment for all. For example, you learn very quickly that the best way to ensure your food is actually gluten free when you’re coeliac is to start your order with an apology for being annoying, and end it with a self-deprecating joke. Otherwise, you risk an eye roll, a comment about pretentious hipsters, and a guessing game as to whether your food is actually safe to eat.

Even if the words “I’m sorry” don’t cross my lips, I’ve learnt to present certain pieces of information about my health with an apology in my voice. Not because I’m really ashamed of them, but because I am consciously crossing the taboo of discussing illness, mortality and admitting to weaknesses rather than just “being positive”. To not apologise in these circumstances, usually leads to questions of whether it’s really that bad if I’m not miserable, and difficulty getting access needs acknowledged or met.

In a confusing contradiction, I find I must also apologise if I DON’T want to talk about my health, as it’s seen as entirely unreasonable to have an assistance dog, mobility aid, or other visible sign of disability in public, but not be willing to satiate the curiosity of every tom, dick and harry as to why. People often ask invasive questions and then are horribly uncomfortable with the answers, yet take no responsibility for the situation, laying all of that at my feet instead. This isn’t just a disability thing, of course. This is something many of us experience, for example, with the question “when are you going to have babies” and the answer “I can’t/don’t want to/have just recently spawned a half alien half human hybrid”. Somehow it becomes the place of the answerer to apologise for the discomfort, rather than the invasive-question-asker to acknowledge they were over-stepping.

The undercurrent of all of this seems to be that warranted or not – I feel I am expected to apologise frequently, and simultaneously to feel bad about how often I apologise.

Refuting the Expectation

But this is not to let myself off the hook. Just because the world potentially expects something from me, it doesn’t mean I have to give it. The world has a lot of expectations of what disability looks like – most of them negative – and I do not meet many of them. Continuing to apologise in this way is reinforcing the belief that it’s valid to expect apologies, and while it’s currently socially acceptable to feel discomfort around disability and illness, or irritated at having to accommodate differences, that doesn’t have to be the way it will be in the future. Not apologising may be one way to allow people to acknowledge their own discomfort, examine it and maybe even address and eradicate it.

While exploring all of this has made me realise the apology habit is going to be harder than I thought to break, it’s made me more determined to do it. Whether it’s not apologising for someone bumping into me, not taking responsibility for anyone’s discomfort with my answers to invasive health or baby questions, or simply asking for gluten free food without calling myself annoying, I strongly suspect each small step will make a difference.

Thanks for reading,
Little Miss Autoimmune

Tuesday, December 31, 2019

The Difference A Decade Makes

(Cross posted from Facebook)

Happy New Year, everyone! (It's already new year's eve here in New Zealand, with the decade ending in just a few hours.)

At the end of 2009, I was on a lot of steroids and pain killers, neither of which were really helping my autoimmune arthritis. My weight was ballooning, my muscles were weakening in an alarming way, and I could barely walk. I was very depressed and anxious, and it didn't seem like any of it would ever get any better.

But... a lot can change in 10 years.

I had friends and family who loved and supported me, a counsellor who really helped, and a nurse and GP who fought for me, at times against my own specialists. The nurse got me on an amazing miracle drug, I went into a partial remission, and got my life back on track.

But of course life is never that simple. There have been many ups and seriously low downs, many extra diagnoses, and the amazing life-changing gift of an assistance dog, from the fabulous team at Assistance Dogs New Zealand.

I've written books, fallen in and out of love, and had so many joyful, exciting, weird and wonderful moments.

My body has done some f**king weird shit, and it's been both hilarious and terrifying, but I'm glad to say most of the time the laughter has won. And I'm even more glad to say, I am ending this decade happy, and with more health and strength than I ever could have imagined ten years ago.

Living with chronic illness and disability is so so hard at times, but part of what makes it hard is the fact that it's so changeable. Don't ever forget, sometimes that change can be for the good.

Little Miss Autoimmune

Monday, December 9, 2019

Sweat, Create, Meditate Part Two (Mindful Creativity)

The other day, I found myself describing depression as being like the noise an air conditioner makes. The sound is always there, but much of the time you can tune it out. It becomes a background fixture of the environment, that you give little or no attention to. But then there are days where the noise draws your focus – perhaps because you got less sleep, or you’re stressed – and suddenly that noise you are normally able to tune out seems a whole lot louder. It breaks into your thoughts and interrupts your concentration, but you’re still able to function, and with some time, you’ll go back to filtering the sound out again. And then there are days when it’s all your can hear. You wonder how you ever did anything other than listen to that drone. It becomes all-consuming and thinking of anything else – doing anything else – becomes impossible. The sound become your life for a while, until you’re able to get back on top of things.

I realised later that the same could be said of anxiety, chronic pain, and other physical health problems. In fact, when I’m very anxious, I do sometimes experience it as a roaring sound in my head.

In my last post, I talked about how movement has helped me in getting myself back on track after a not so great period with my health. One of the other things that has helped a lot has been making a point to spend time being mindfully creative. I’m lucky enough to have a job which is creatively based, and I am very thankful for that, but it does mean that sometimes projects slip from being an enjoyable creative practice, to a stressful, time-pressured work one. Even outside of work, many of my creative projects this year have been very goal/completion focused, such as making weighted blankets as part of my Assistance Dog NZ fundraising. This focus on the final product, rather than the creative journey, has often meant I find myself “making on auto-pilot”, which goes against the important mindful aspect.

Spending time doing creative activities purely for the fun of them – playing and experimenting with no pressure to make something useful or “good” - means that my focus is only on the process. It pulls away from that air conditioning noise, and into the present moment. I find when I am able to make time for that playful creativity, within a few minutes my breathing is slowing, my muscles relaxing, and the roaring in my head quieting. Allowing myself that time really makes a big difference in getting myself back to a good place. Traditional mindfulness has never really worked for me, despite putting in a lot of time trying over the years, but there’s something about “mindful making” that helps the process for me.

Of course, when you’re stressed, it’s difficult to find time for creativity, and thinking of projects can feel intimidating. But creativity doesn’t have to mean a huge procedure. Here are a few of the ways I found to be creative over the last couple of months. Whatever method it is you use, I can really recommend using mindful creativity as a way to manage health stuff.

Making a different meal/baking a new recipe

Sometimes something as simple as making a meal or baking can be a great way to add creativity to your life. With food allergies, I find myself making the same things over and over. Taking the time to find new recipes – even if they’re comprised of many of the same ingredients – can be an enjoyable and relaxing way to spend an evening.

Knitting groups

I went to a couple of different knitting groups over the last couple of months. Both were free, and one of them offered lessons as well. I wasn’t doing anything particularly impressive – I’ve just been making peggy squares out of the ends of balls of wool. I may stitch them into a blanket at some point, or they may just be left as is. Either way the process was calming. 


Here in Wellington, there are often a range of different workshops you can attend. Many of them are free/koha entry. I attended a koha candle making workshop with a friend, which was a lovely way to spend an afternoon. The candles were very simple to make, but ended up looking quite impressive.

Photograph of two home made candles in jars, one with a gold lid on, the other open and with a ribbon tied around the neck of the jar.


If the budget is low, finding ways to be creative can be a bit harder, but sometimes just rearranging furniture, reordering books/other items on a shelf or decorating something with scrap materials can be a cost-free way to be mindful. I ended up decorating a shelf with pictures of butterflies I cut from an empty tissue box. The end effect was quite striking, even though it came from rubbish materials. Scrap booking, collage or papier-mache all make great use of free waste materials.

Paintvine/painting/colouring in

Paintvine was the most expensive of my projects over the last couple of months. This is an evening, where you complete a guided painting with a group while drinking wine. I’ve done a couple of these now, and I really enjoyed the experience. I’ve heard some cities have similar groups such as group paint by numbers, and Bob Ross evenings. I found this particularly effective, as I had to concentrate so hard on the painting, I didn't have any mental space for intrusive thoughts. Regular painting, or colouring in would also be effective for this.

Simple red, white, pink and blue painting of a huge wave with a mountain and a sky and sun in the background.

Wellington Conversations/Creative Events

Not strictly a creative practice, but one of the other very helpful things I did was attend an up-cycled fashion show, from Vinnies Re Sew and attend a Wellington Conversations event on the topic of “What is beautiful here?” Both left me feeling creatively inspired and uplifted. Wellington Conversations will be continuing in the new year, and I’d really recommend heading along for a dose of community and connection if you get the chance.

Thanks for reading,
Little Miss Autoimmune

Sunday, December 1, 2019

Sweat, Create, Meditate (30 Days of Yoga)

When I was typing out the title for this post, I accidentally wrote “Swear, create, meditate” and honestly, that would fit too.

A couple of months ago, I had a pretty big blip. The details of what happened aren’t too important, but it was one of those perfect storm episodes where my physical health, mental health and sleep disorder all went to pot at once. Which came first? I don’t really know, but once it started to go downhill, they all fed into each other. There were, of course, a few external factors – a stressful period of work/business, the change of season, some personal disappointments – but over the years, I’ve learned it’s less about what’s going on and more about how I respond to it.

There are a few things that always seem to help when I am not doing so well – movement, mindful creativity and reconnecting with myself and with friends. Of course, actually remembering to do those things, and then finding the motivation to get out of bed and do anything, are separate problems, but one issue at a time! Perhaps this blog post will serve as a reminder for me to do them next time.

I wanted to write particularly about the movement part of this today. While I know that exercise is really good for me when I am unwell, it can also be a bit of a risky business when things aren’t great. I’m having some body image issues at the moment, as I’ve put on a fair bit of weight over the last year. While this is kind of a good thing, after years of not absorbing food properly, it can also lead to some unhealthy attitudes and obsessions with exercise and weight loss. To try and counter this, I tried to hold the quote “Exercise is a celebration of what your body can do, not a punishment for what you ate” in my mind.

“Exercise is a celebration of what your body can do, not a punishment for what you ate.”

This led me to 30 Daysof Yoga with Adriene and The Fitness Marshall on YouTube. Adriene has such a peaceful, loving, gentle way of working that I found myself focusing less on the exercise and more on just taking that time to build my own emotional and physical strength. The Fitness Marshall dances are so much fun, it really does feel like a celebration and just a joyful thing to be doing, regardless of the physical benefits. I can’t dance in the same way I could pre-illness, but both the yoga and dance videos have proven to me that I can do more than I realised, and over the 30 days, I have regained strength and flexibility I thought was lost forever.

Of course, it wasn’t all smooth sailing. On day two, I completely broke down, doing far more crying than yoga because my emotional state was still pretty fragile from sleep deprivation, and there was one day where I had to drop down into child’s pose halfway through the practice, as my blood pressure was too low to continue. There were also a number of days where my assistance dog tried to join in, and I collapsed out of poses, laughing, as she licked my face or climbed over and underneath me (and one day where she bit my boob while I was lying on the floor– not sure what that was about!) But my intention for the 30 days was simply to show up on the metaphorical yoga mat every day, and I’m so glad I did. Taking that time for myself has really helped me to get back on track.

The good thing about this blip has been that even at the worst points, I knew it was temporary. When you’re in a bad place, be it physical, mental or sleep related, it can be really hard to see any way out of it. It feels like it will never get better, and more than that, it feels like it has never been any better before. The bad place is just all consuming. 
Image contains: photograph of the character Eleanor from the TV show The Good Place, holding a glass of wine, with the text "Holy mother forking shirtballs, this is the dad place" overlayed.

Being able to hold on to the insight that it is always temporary and will pass is a huge step forward for me, and one I hope I will be able to hold on to when the next (temporary) blip arises.

Thanks for reading,
Little Miss Autoimmune

Monday, September 16, 2019

Disability Pride

It's been a while since I blogged. Life has been it's usual mess of weird, wonderful and everything in between.

I just wanted to share this video with you. It's disability pride week, and as part of that filmmaker Rajeev Mishra and I collaborated on this film of one of my spoken word pieces.

Hope you enjoy!
Little Miss Autoimmune

Saturday, January 26, 2019

Six Months on with Bindi

Strangers often come up to me and ask about Bindi. I mean, how could they not when she’s so cute? Most assume I’m training her, but when they find out she’s working with me, they generally have two questions:

How long have you had her? and How have you found it?

The answers?

Six months and Life-changing.

It’s hard to put into words how much of a difference Bindi has made for me. There are the obvious things. When my blood pressure is low or my joints are really sore, it’s such a relief to have her pick things up for me, so I don’t have to struggle down to the ground or risk passing out. When my legs are unsteady, having her beside me can keep me upright as we make our slow progress home. If I do end up falling, having her lying beside me with her head on my chest is a source of comfort and makes me feel less vulnerable. Also, she’s not been trained to do this, but she has somehow learned to pick up when my blood pressure is dropping and lets me know by biting on her lead or nudging my hands. She generally notices before I do, giving me time to sit down and avoid passing out. 

Sitting next to me, being my bodyguard after I fell down.

In the last few months, I’ve developed retinal migraines. These are episodes where I get lights and colours obscuring my vision for around 15-20 minutes at a time. As you can imagine, it can be quite scary not being able to see anything, but again, Bindi’s presence has been really reassuring. With the help of Julie from Assistance Dogs New Zealand, Bindi has been learning to do some guiding, and will now locate and take me to a chair when prompted. Knowing she can do this means I’m not so worried about one of these episodes happening while I’m out. I feel like we’re a team, and whatever happens, we’ll be able to handle it.

Of course, my original reason for applying for an assistance dog was my sleep disorder. This has also massively improved. I went from being genuinely scared that I was going to break my neck in my sleep, to having weeks where I don’t have any sleep disturbances. Having a person staying with me often made my sleep disorder worse, as their emotions and frustrations played into it, but Bindi’s inherently non-judgemental nature provides reassurance and comfort. When I do go sleep-wandering, I seem to do it in a less dangerous way now, as even if I’m running away from a nightmare, I factor Bindi into it. Whereas in the past I just got up and ran, often straight into a wall, my first thought now is to get Bindi away from whatever scary thing I’m dreaming. Since she’s reluctant to get out of bed in the middle of the night, it takes a while and gives me time to wake up properly. This isn’t something we could have predicted or trained her for, but it’s had such a positive effect regardless.

Then of course there is the emotional side of it. Having a soft little friend nearby at all times is just so heart-fillingly wonderful. I have so much love for Bindi, it’s hard to express. I don’t think there has ever been a time in my life before where I have laughed every single day. There is nothing like watching her play with her toys or do roly-polies down the bank at the park when she's off-duty. She does so many funny things and is just generally so cute it makes me smile every time I look at her. If I am ever sad, just sitting on the floor with her and playing is the best thing to make us both happy.

Trying to be a lapdog and reminding me it's dinner time (while she's off-duty obviously!)

Cuddling one of her toys

Now, all of that stuff is great, but this is a situation where the whole equals more than the sum of the parts. The difference she makes to my life is just so much more than this. There really is only one way to describe it – life-changing.

One of my neighbours commented that he was amazed by the change he’s seen in me since having Bindi. He works near the park we go to several times a day, and so sees us out walking. He asked if Bindi was for my anxiety, as he said he was really impressed with the visible change in my confidence. 

The funny thing is, I wasn’t aware that I looked anxious before, nor had I noticed a change in my anxiety levels initially. It took me a while to realise what it was he was picking up on. It’s like Bindi has freed up a part of my brain. In the past, a part of me was constantly occupied with worrying about the things I mentioned above – falls, dropping things, my blood pressure, my lack of sleep. Now, I don’t have to constantly assess whether my legs are getting unsteady or if I’m at all dizzy, or wondering what horrible dream I’m going to have tonight, because I know I have a safety net if something goes wrong. 

This is a cliché, but it’s like I’m been able to let out a breath I didn’t even know I was holding. I’m able to relax in a way I’ve never had the freedom to do before, and I’m so incredibly thankful to Bindi and Assistance Dogs New Zealand for that.

If you’d like to support the incredible work Assistance Dogs New Zealand do, you can donate through my Givealittle page for ADNZ, or consider sponsoring an ADNZ puppy.

Thanks for reading,
Little Miss Autoimmune

Thursday, October 18, 2018


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.

Friday, August 3, 2018

Please Don't Touch My Dog (or Me)

It's been a little while since I posted. At the beginning of July an assistance dog, Bindi, came to live with me.

Golden Labrador dog, lying down, looking over her shoulder at the camera Assistance dog Bindi, sitting on the floor of a bus, looking out the window
If you've been following this blog for a while, you'll know my first match with an assistance dog didn't go all that smoothly, so I was a little nervous leading up to meeting Bindi. Fortunately things have gone really well, and we've bonded quickly. Bindi has been picking up my stick and other items for me, stablising me when my legs get shaky, and helping me get up off the floor when I have accidental lie downs. 

It's been a bit of an adjustment, as I've never before consistently gotten up as early as Bindi wakes me, but I think that routine has been really good for me. I'm outside more, as I take her to the park three or four times a day, and I'm getting way more exercise and social interaction with people I meet there.

Of course, my original reason for applying for an assistance dog was to help with my sleep disorder stuff. That stuff is a little harder to train her for, but we've been working on a couple of things. To start with she mostly just ignored me when I did strange things in my sleep, but for the last week I've been getting her to follow me when I get up to go to the bathroom in the night, so hopefully she will also follow me if I sleep walk too. This won't necessarily wake me up immediately, but if I'm aware of her being there, nudging my leg, I think I'm more likely to wake up and orientate myself quicker, and less likely to do stupid things and injure myself. I've also been training her to turn on a tap lamp, and plan to give her the command when I wake up after shouting/screaming in my sleep. Hopefully she will learn to associate the two, and turn it on herself to wake me up. 

This was on our first day of teaching her to turn on the light, and she was already doing so well.

Overall, I've really been enjoying having Bindi with me. She's so well trained and behaved, thanks to the amazing team at Assistance Dogs New Zealand and so far the response to me having her in public has been really positive. People have mostly been good about not touching her when she has her working jacket on, though I have had a few problems with people crouching down and talking to her instead, which still distracts her - not so great if I'm leaning against her and she runs over to them!

The thing that I've have found slightly strange is answering questions about why I have her. I didn't expect this to be an issue for me, as I've had years of answering questions about why I walk with a stick. Somehow this is different though. When people ask me about my stick, I can just say I have lupus. They may or may not know what that means, but they generally aren't too pushy about asking for more information. With Bindi, people tend to want more specific answers - what exactly is wrong with me? What is she trained for? How does she help? What type of dog is she? I have to admit, I tend to answer "Labrador" to that last one, even though I know that's not what they're asking.

I do understand the curiosity, but I've found the questions difficult to answer on the spot. This could partly be because I'm really tired at the moment, as I'm still adjusting to the new routine, but I also find a bit of the "I'm a fraud" feeling slipping in. When I list the things she does for me, I start wondering if that's enough to justify me having her. They do make a difference to me - her picking up my dropped stick if I'm shaking can mean the difference between me getting home safely straight away, and me falling and spending an hour on the pavement waiting for my legs to start working again. But when I say it like that "She picks up my stick for me" it doesn't sound like much, especially as I'm not always walking with a stick when the question is asked. I've heard that's a feeling a lot of people with assistance dogs go through though, especially as medical conditions are often changeable so there will be times we are well, and don't rely on the dogs so much, and times we are unwell and really really need their help.

I guess it's more of the invisible illness stuff. People often assume I am training Bindi, because I don't look "disabled". I've also had a lot of people assume I'm blind, especially if I'm wearing sunglasses, as that's the first association people make with service dogs. I'm not really bothered by the assumption, but it has led to some interesting situations as people start trying to guide me places - not always where I'm wanting to go, and sometimes by grabbing me quite roughly. This is well intentioned, but I'm fairly certain that no one likes being man-handled by strangers regardless of their level of vision. Unless the person is in immediate danger, I think speaking to them first or a gentle touch on the arm is really all that's appropriate or necessary! I've mostly just been calmly explaining that Bindi is an assistance dog, not a guide dog, in these situations but I did get a little short with the woman who grabbed me and pulled me into the side of the seat on the bus, leaving a bruise on my leg - definitely wouldn't have been helpful if I were blind either!

All in all, there has been a lot of learning over the past few weeks - for Bindi, me and for the general public at times. I think that learning will continue for a while yet, as all of us keep figuring it out along the way.

Thanks for reading,
Little Miss Autoimmune.

If you'd like to support the work Assistance Dogs New Zealand do, please consider donating through my givealittle page. Any amount - large or small - is incredibly gratefully received.

Tuesday, July 3, 2018

I am a mosaic not a cookie jar

Picture of a face. A collage made up of small bright coloured pieces of paper.I was thinking today about how it feels when someone sees you as something that needs to be “fixed” when you’re a chronically ill person. I’ve tried to explain this before – usually falling back on saying “I don’t need to be fixed because I’m not broken” but I’ve come to realise that explanation isn’t going to work. Because they don’t believe you. In their eyes you are broken, and no amount of telling them you’re not is going to change that.

So I started thinking about it differently. What if I am broken, but that’s not really the point?

Imagine you own a cookie jar. It’s a beautiful cookie jar, a functional one too – so big and holds those cookies so well! And it can store other stuff as well – a multi-functional jar. Maybe sometimes you make punch in it, and serve it up at dinner parties, and everyone tells you how beautiful and wonderful it is.

Then one day the cookie jar breaks. Smashes. Like irreparable - broken into a million tiny pieces, some of it is now ground into sand, smashed. You devote days – weeks – to trying to put it back together. You spend hours on the internet, and talking to repair specialists, but all of them say the same thing: “I’m sorry, but this is too broken to repair.” But you don’t believe them. You go it alone, trying glue after glue. You even try some alternative repair techniques – you origami the crap out of that jar, trying to make it hold together. 

But none of it works.

You cry. You get angry. You spend days on the floor just lying in amongst the pieces.

And then one day you accept it. Your jar is broken, and it isn’t coming back. So you pick up the pieces, and you start to make a mosaic.

There are still days when you miss the jar, but as you work, you start to realise you are making something amazing. Some days you even look at the art you are creating, and you think it is more beautiful than the cookie jar was originally. You start to love it and become proud of it.

Then someone comes to visit. They look at the mosaic. Their face falls. You broke your jar, they say.

Suddenly the mosaic you worked so hard on doesn’t seem quite so beautiful anymore. Suddenly you feel embarrassed of this thing you have been building. It seems unimportant and useless, not like the cookie jar which could hold all the things.

I know someone who’s jar got dirty, they say. They cleaned it and it was good as new.

You should go to a repair specialist, they say

You are just not trying hard enough. You could fix it if you wanted to. Think positive!

I can fix it! It just a tiny crack.

And you start to wonder if you were exaggerating. Maybe there was only one crack, and you could fix it! So you pull apart the mosaic you have spent so long building, and you are hopeful that this time you will fix it – you will have your cookie jar back! And you try, and try again to fix it. You go to the woman who washed her dirty jar, and she washes the pieces, but that doesn’t put them back together. You go to another repair specialist, but they tell you there is no hope. So you try harder, and you think positive, and you pray and hope, and try again and again… but still it is broken. 

You have to give up again.

You have to grieve again.

You have to start the process of acceptance and making something good out of the pieces right back from the beginning.

This is what it feels like when someone wants to help fix or cure chronic illnesses. It feels like they don’t see all the good you bring into the world – all the beauty you have created around the hard parts… And maybe that is not how they feel. Maybe they do think the mosaic is beautiful, they are just convinced the cookie jar is better and are sad for you that you don't have it anymore. But that is not for them to decide, and it’s pointless and kind of hurtful to keep bringing it up when the cookie jar is gone.

I know that people are trying to help when they suggest fixes for my illnesses, and I do appreciate that they are wanting to make things easier for me. But there is a big difference between “This will fix you” and “I wonder if this might help?” and also a big difference between suggesting something and insisting that someone must try it. I don’t mind when people make suggestions – some of them I am really thankful for – but I do need people to do it in a way that respects the life I have now.

I am done searching for that cookie jar. I love the mosaic my life has become, and I’m not looking to go back. But if you can suggest a gloss that will make my pieces a bit shinier… then by all means tell me about it. I'm all for shiny pieces.

Thanks for reading,
Little Miss Autoimmune