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

Monday, June 18, 2018

Plastic Straws Are A Strange Hill to Die On

The other night I found myself watching a video about a bar which has started using straws made out of pasta as a biodegradable alternative to plastic straws. Now, obviously I’m a coeliac, so this isn’t something I would personally ever want, and I could see a few other flaws with the idea. But overall, I thought it was cool that the bar was thinking about the problem, and approaching it with creativity and innovation.

And then I read the comments.

Man, this has to have been one of the most bizarrely passionate comments sections I have ever read. People were mad about food wastage, people were mad that we don’t just drink straight out of the glass, people were mad at hipsters… the anger just went on and on. But the comments that surprised me were the many many able bodied and normal-eating people getting mad on behalf of coeliac and disabled people.

So, the coeliac part of this is kind of obvious. If you order a drink, you don’t expect for it to arrive with a lump of glutenous pasta in it, and in all honesty if I drank out of a straw assuming it was a normal one, and then later found out it was made of gluten, I would be pretty annoyed. But that scenario is quite unlikely. While there obviously is a noble environmental motivation behind this, the pasta straws are clearly also (at least in part) an advertising gimmick for this bar. They’re not keeping the fact that their straws are made of pasta a secret – they’re proclaiming it loudly for all to hear. It may become an issue down the track, when the novelty wears off, but any problems would be mitigated by a simple note on the menu saying that the straws contain gluten and to let staff know if you have an allergy.

The disability part of this is a bit more complicated. For some people with disabilities, differences in strength, function or movement can mean that straws are an essential part of daily living. People facing these issues may not be able drink safely or independently without them. In this case, straws usually do need to be plastic, as the size and malleability are important, and therefore metal or pasta straws aren’t always a suitable replacement. Straws are also often used in rest homes and hospitals for similar reasons, and again alternatives other than plastic probably wouldn’t be appropriate.

When I saw comments along these lines, and realised the majority of them were coming from able-bodied people, at first I felt pleasantly surprised. It was nice to see able-bodied people thinking outside of their own experience and considering what impact a simple change might have on people with disabilities. But as I read on, and the anger and vitriol in the comments rose, I started to feel a bit odd about it.

While it is nice to see able-bodied people going out of their way to advocate for people with coeliac and/or disabilities, I feel like this is kind of a weird one for people to be getting so passionate about. The gluten stuff is a potential danger, but it wouldn’t be that hard to remedy with clear labelling and a few simple kitchen protocols to avoid cross-contamination. With the disability stuff, the times I’ve eaten in a café or restaurant with someone who needed a straw to be able to drink, that straw came from the person’s bag not from the restaurant itself. This isn’t my experience, so I can’t say this for sure, but my guess would be that it’s pretty common for people who need straws to carry their own, as they couldn’t be sure of always being able to get one from a bar/restaurant. While people needing access to plastic straws is an issue, I’m just not sure bars not supplying them is as big of an issue as some were making out.

The thing that bothered me the most about this though, is I don’t often see this level of passion from able-bodied people over other disability or illness issues. There have been so many times when I or someone else has pointed out that something is not accessible, and the response has been “Oh… that’s a shame,” and a swift change of subject. Worse, online the response is often defensive, angry or filled with nasty personal attacks, instead of doing anything to try to understand or mitigate the problem.

Where is the passion and support for those things, which (in my opinion) cause a much bigger barrier to disabled people participating in life? I know, we all have our own lives, our own causes and we simply can’t get involved in fighting for everything. But I do have to ask myself why, when people are finally getting passionately involved, is it over plastic straws?

Now I don’t want the take away from this to be “stop caring about plastic straws.” This is a real issue – both from an environmental perspective, and from the point of view of making sure people who need straw still have access to them. But if you care about plastic straws for people with disabilities, maybe just try to use some of that passion towards other disabilities issues too.

Thanks for reading,
Little Miss Autoimmune

Sunday, April 15, 2018

A Little Bit of Lupus - Guest Post by Author Megan O'Russell

Author Megan O'Russell
Along with being a blogger, I'm also a young adult author. One of the cool things about this is that I get to connect with other authors from around the world. Like any career, writing can be tricky when you're living with chronic illness, but it is more forgiving than many other jobs, and it certainly provides other benefits and ways to cope with the harder parts of illness. Someone who understands this is my fellow author Megan O'Russell. Like me, Megan is living with lupus and writing young adult novels (her writing is brilliant by the way - highly recommend How I Magically Messed Up My Life in Four Friggin' Days.) Unlike me, she's also juggling a career as a musical theatre performer and living in a tour bus!

Megan's been kind enough today to take time out of her busy schedule, promoting her new book Boy of Blood to tell us a bit about her fascinating life and about her lupus story.  

A Little Bit of Lupus by Megan O'Russell

I was diagnosed with Lupus after one freak day when I was twenty-three. It had been snowing during the night, and I was too nervous to pull off the highway to get gas on the way to work.

Fast forward to the end of the day. I was stuck in a parking lot with a dead car battery, no gas, and really terrible frostbite, even though the temperature had jumped up to 50 Fahrenheit (10 Celsius).

My husband insisted that I go to the doctor and have my gray fingers looked at. Luckily for me, the doctor at the urgent care took the time to ask how I had gotten frostbite and was diligent enough to realize something wasn’t right. About a week later, I was seeing my first Rheumatologist with a diagnosis of S.L.E.

That was… we’ll just say a while ago.

And here’s the thing. For someone who’s been living with autoimmune for a while, I’m really pretty healthy. I make my living singing and dancing on stage as a musical theatre performer. I’m also an author with three different series at two different publishers.

Right now, I’m on a national tour of a show where I spend much of my allotted sleep time curled up on the floor of a bus. Sleeping under my bus seat isn’t as bad as it sounds, but still, not something that you picture someone with a chronic illness pulling off.

Whenever I tell someone I have Lupus, either in casual conversation, or because I need them to know, I feel like an imposter. If I can dance on stage, I’m not really sick right? If you can hike a mountain, do I actually need to go see a doctor?

It comes from all sides. I had a lab tech laugh at me because he didn’t know why he needed to do a chest scan on someone who’s still sweaty from doing a 5K (I’d say running, but my lungs were in bad shape and I’m not great at self cooling, so it was like a 2.5k run/2.5k shamble along).

My husband almost stopped talking to some of our friends because they could not understand why I could possibly need to sleep between shows. They thought I was just being lazy and territorial in my wanting to nap in my room. Nope. I have to sleep to stay off steroids.

Trying to explain to each new team I work with on a show that, yes, I have Lupus. No, you won’t ever notice on stage. The spilt between treating me like a hypochondriac and an egg shell are about 50/30 (20% are really awesome).

I was at the doctor not too long ago because I wasn’t breathing very well. Her response: “How are you dancing if you can’t breathe?” I see lots of spots and try not to fall over, that’s how.

The other actors do crazy workouts before the show. I have to save my energy for the stage.

Some of the people we travel with only manage to sneak in a few hours of sleep a night. I’m not trying to compete with how little sleep they’re able to get when I say I’m just plain old exhausted. Not from lack of sleep, just from existing with an auto-immune disease.

And… I still feel like an imposter because I’m not that sick. Even at my worst, I’m still surviving.

Maybe that’s why I’ve turned so whole-heartedly to writing. A profession where it doesn’t matter if your lungs are acting funky, and no one cares if I look a little dead behind the eyes.

In acting, the first thing I do in my workday is go into a dressing room and strip down with my coworkers. There’s nowhere to hide the dent in my legs from the steroid injections.

My characters don’t care about the thigh dents. My literary agent doesn’t care if my cheeks are puffy from steroids.

I am completely safe and competent while writing. I can create a world where monsters reign and magic is a constant battle while icing my knees. The magic of first love can be created while my whole torso (at least it feels like my whole torso) is covered in Vicks.

Acting and writing are both forms of storytelling, but when living with auto-immune, they are the exact opposites.

My word count doesn’t give me a five minute warning that I’m about to start a two hour creative sprint that will stop for nothing short of the theatre catching fire.

If my brain can’t sort through how to finish a scene, I click save and shut the computer. And you know what? My characters can’t complain. Why? Because I shut the computer, so ha!

In writing, I’m in charge. I get to say how much or how little I’ll do on any given day. I have the power to take a step back for a moment, and no one will take the story from me because it’s mine.

I’m not an imposter. I’m an author. And the author writes the rules… literally.

And there’s something in spending more time as an author, in finding a venue outside the stage lights where I’m useful and competent, that’s made it much simpler for me to say no in other aspects of life as well.

No, you’re wrong. Just because I don’t look sick doesn’t mean I’m fine and just need a cup of coffee.

No, I don’t have to go to the gym everyday before the show just to keep up appearances. I’d rather not have fire shooting through all my joints, thank you very much.

Page or stage, I am living and thriving with Lupus. And it doesn’t really matter who can’t believe I’m ill.

I am more than just my messed up little body. I am a useful, competent, worthy human, and I am not an imposter. Lupus is one small part of my enormous and overwhelming life. My story is my own.

Book Cover of Boy of Blood by Megan O'RussellMegan is a native of Upstate New York who spends her time traveling the country as a professional actor. Megan's current published works include the Girl of Glass series, How I Magically Messed Up My Life in Four Freakin' Days (The Tale of Bryant Adams, Book One), and The Girl Without Magic (The Chronicles of Maggie Trent, Book One).

When not on stage or working on her books, Megan can be found blogging on

For more information on Megan's books and for Megan’s author blog, visit

Thursday, January 18, 2018

Anxiety? Or crappy situation.

I’ve been having the same conversation with several wonderful people in my life lately. And, if I’m honest, I’ve been having the same conversation with myself too. It can basically be summed up like this: 

Just because you have anxiety, it doesn’t mean things aren’t actually scary.
Just because you have anxiety, it doesn’t mean life isn’t really hard sometimes.
Just because you have anxiety, it doesn’t mean people aren’t behaving in an absolutely sh*tty way towards you.

When you live with anxiety, you get used to pushing down your feelings. Your mind and body spend a lot of time making you feel like you are in serious danger, but logically you know you’re not, so you have to push those feelings away in order to be able to function. Anxiety also spends a lot of time making tasks feel ten times harder than they should, magnifying criticisms, and twisting words and situations until you feel worthless and like everyone hates you. So we spend a lot of time not trusting our own perceptions – repeatedly telling ourselves that we are not trustworthy.

The thing is though, sometimes we are right.

At the end of last year, I was lucky enough to be able to travel overseas to England and Germany. Considering I live literally on the other side of the world, I knew that some of this was going to be a real challenge for my health – both physical and mental. Even more so because in the weeks before I left, I had been under some extreme stress and as a result had a really serious sleep walking incident injuring my head and neck.

Fortunately, my physical health held up surprisingly well while I was overseas. There were a couple of points where I really, really needed the wheelchair assistance at the airports, as I couldn’t hold my own weight after sitting for 12 hour flights, and one day in London where I had pretty bad vertigo and nausea. But otherwise I kept it together physically, and my anxiety was staying in check too. 

Until I got to Germany.

My arrival in Germany was not at all straight forward. My aunt was kind enough to drive me the two hours from where I’d been visiting her in Bristol, back up to London, then I needed to catch two flights and two trains to reach the city where my friend lives. I was nervous about the journey, given that I have the direction sense of a carrot and quite often get lost in my own city, let alone halfway across the world where my grasp on the language is pretty limited. But I psyched myself up, researched and wrote down the train times, and started the journey.
Wing of a plane over clouds, taken from an airplane window

And then the flight was delayed.

And then the second plane was late.

And then by the time I arrived, the train I was supposed to catch was no longer running, and the only other option was a much longer journey.

And then I realised that there were only two people around, neither of whom spoke any English, and I was completely blanking on any German other than “Entschuldigung, sprechen Sie English?” (Excuse me, do you speak English?) and “Kannen Sie mir hilfen bitte?” (can you help me please?) which does not help when the answer is invariably “nein” and you do not have the language skills to understand the help they are trying to give you anyway.

And then, after managing to communicate that I needed to get a train to Jena (ein Zug nach Jena), the information I was given did not match up with the information displayed on the train platform.

And the ticket machine did not have an English option that I could find, and it timed out three times as I tried to figure out how to make it work. Nor would it accept my money or my card, and the fines for getting on the train without a ticket are high.

And when I got hold of my friend to ask for help, she couldn’t translate the information either.

And then my phone died.

And then there was no one around, let alone anyone I spoke the same language as.

And then I was completely alone on a train platform 
in Germany,
in the middle of the night, 
in the snow, 
with no idea whether I was even in the right place.

So naturally, at this point I was panicking. By now it was after midnight, I was jetlagged, I’d been traveling for about 14 hours, and I was fricken exhausted. My legs were spasming, threatening to give out, but I knew if I fell I probably wouldn’t be able to get up again. Given the snow, being stuck on the ground overnight would likely mean hypothermia… and possibly losing some toes.

To cut a long story short, I saw there was only one train left on the board, so finally managed to persuade the ticket machine to take my money and got on it. At the next stop, I discovered the information I’d been given about the second train was completely wrong, but I did at least find some people who spoke English. They didn’t know where I needed to go, but they could at least point me in a likely direction. I then spent far too long standing in an elevator which said “doors are opening… doors are closing… doors are opening… doors are closing…” repeatedly but wouldn’t go anywhere or let me get out, before finally dragging myself and my suitcase up a couple of staircases while a group of men laughed at me from the top. I found the right train, got on it, and my friend met me at the other end.

Okay, so aside from the fact that a lot of this is now funny in its ridiculousness with some distance, why I am telling you all this, and what does it have to do with anxiety? 

I look at this story now, and I am incredibly proud of myself for keeping it together and figuring out what to do to get myself safely across Germany. At the time though, I was furious at myself for panicking. I was convinced I was making a big deal out of nothing, and that anyone else – anyone who didn’t have health problems or anxiety – would have been absolutely fine. Heck, I was even blaming myself for the whole situation – surely I was somehow to blame for the planes arriving late, the ticket machine being faulty and for the train timetables at the airport being out of date. It was clearly All. My. Fault.

Except it wasn’t.

None of this was in my control, and in fact, I handled it a lot better than most people would have. Right from the first delayed flight, I was coming up with back up plans for what I would do if I couldn’t catch the flights and trains I’d planned to, and when those back up plans got thwarted, I kept coming up with new solutions until I found something that worked.

It really wasn’t until I told the story to other people, and they responded with a horrified look, or said they would have sat down and cried if it had been them, that I realised this was actually a really stressful situation, not just an overreaction from me. This is pretty much the conversation I keep having with my friends. I find myself saying to them:

Yes, you have anxiety, but no, you are not overreacting, your partner/boss/flatmate/family member/friend is actually being unreasonable. No, you are not weak and useless, life has just thrown you so many curve balls you’ve forgotten what straight looks like, and actually you are stronger than everyone else to have dealt with all of them. No, you are not stupid, your work/study/technological item is just really, really hard to get your head around sometimes.

You see the thing people sometimes forget is that it’s entirely possible to both have anxiety and be upset because of a genuinely yuck situation – the two do not negate each other. 

Each friend who has come to me, I’ve reminded them of this, and they’ve done the same for me when I’ve started to doubt. Of course, there are going to be times where it is my anxiety or an overreaction, but I honestly think deep down I do know the difference, I’ve just stopped listening to myself. 

I don’t know what the solution is here. Finding the balance between pushing anxiety away, and listing to the real and valid fears is hard, and it’s something I (and my friends) will probably have to keep working on for a while. In the meantime, when my friends come to me with situations like this, I’ll remind them of one important thing:

You are worth trusting

And I’ll remind myself of the same thing.

Thanks for reading, 
Little Miss Autoimmune

Tuesday, November 21, 2017

When you really have tried everything...

Last week, I had one of the worst sleep-walking incidents of my life. I’d had some distressing situations going on, and as often happens during times of stress this led to my sleep disorder worsening. I sleep ran/fell full-speed, head-first into my cupboard door. As you’ll see from the photos below, this caused some damage to both my head and the door, and I also injured my back and neck in the process. I spent the rest of the night in hospital, lying perfectly still, while doctors assessed whether my neck was broken. I get very anxious about my neck being touched, so having to let strangers put their hands around my throat, and at times restrain me to stop my head moving was probably one of the most stressful parts of all this for me. It turned out to be a complicated task as my X-rays don't look normal for someone my age due to the damage to my spine from my arthritis, and so making a clear-cut ruling as to whether or not my neck was broken was difficult to say the least.

My head has now healed up, bar some scarring, but in the nights since, I've continued to have sleep disturbances, waking with frightening dreams and repeatedly getting up to interact with them, often re-injuring myself. I’ve now got a motion sensor night-light which wakes me up if I get outside my bedroom, but the sleep disruptions are still exhausting, and it turns out there are still several ways for me to sleep-injure myself without leaving my room (sorry knees!)

Most of the time, I don't think living with illness is a big deal. This is one of the times where I'm reminded it kind of is. My neck has been cleared, but this very easily could have gone the other way, given the force with which I hit the door and the fact that my bones are already weakened by my illnesses and medications. Even though I tried very hard to comply with the medical staff's instructions to keep completely still, the stress and sleep deprivation caused my muscles to start spasming and the nurses had to restrain me to try and protect my spine. If my neck had been broken, this could have caused serious damage. As much as I want to stay positive, find the funny side, and calmly move on from this experience, I can't help but feel a little scared when I think about that.

I’ve realised though, that right now, it is okay for me not to be okay. Being scared is a normal reaction to an abnormal situation. In fact, I think it would be far more worrying if I was completely fine right now, as that would be a sure sign that something was very wrong! I’m handling this a lot better than most people would, as I’ve had plenty of full-on health situations, and have built up a fair bit of resilience. But I’m still not okay. And that’s okay.

I’ve been getting a lot of questions lately from friends as to why I’m not on sleep-medication, whether various alternative therapies would help, or whether I should be in some way restrained at night. Of course, after this, I have myself been questioning my decision not to seek further treatment for my sleep disorder. While I have hurt myself before while sleep-walking, this is the first time that I’ve faced the prospect of ending up with a long-term injury caused by my sleep disorder. I even started feeling guilty about my decision, and wondered if I brought this accident on myself by choosing not to continue searching for answers.

But this guilt comes from an illogical place. My doctor fully agrees with my decision not to continue looking for treatment, and she confirmed that there are no more medical options left anyway. When it comes to non-medical therapies, I have fought the sleep disorder with everything I have. To clarify things for myself, I wrote down a list of everything I have tried to help improve my sleep disorder. It was four and a half pages long, and I’m sure I was forgetting some things. I’m not going to include the full list here, but here are a few examples:

  • ·         Sleeping tablets
  • ·         Different sleeping tablets
  • ·         Medication specifically designed for sleep walking
  • ·         Sleep restriction therapy
  • ·         Treating thyroid, iron, vitamin D and vitamin B12 deficiencies
  • ·         melatonin
  • ·         Meditation/mindfulness (various types)
  • ·         Relaxation (various types)
  • ·         Cognitive behavioural therapy
  • ·         Homeopathic sleep drops
  • ·         Lavender sleep balm
  • ·         Weird alternative therapy I can’t remember the name of which involved holding metal rods and balls
  • ·         Treatment for heavy metal poisoning (including removal of fillings)
  • ·         Keeping a strict bedtime and wake up time
  • ·         Only going to be when tired and not setting an alarm
  • ·         Warm milk
  • ·         Counting out of sequence
  • ·         Sleeping naked
  • ·         Sleeping under a weighted blanket
  • ·         Hypnosis (both in sessions with a therapist, and self-hypnosis using a guided audio.)

Most of the things I’ve tried made no difference to my sleep-problems, while others made it worse, or had dangerous side effects. The only thing that made a significant difference, was having an assistance dogstay with me, but it’s going to be while before I can have a dog permanently.

As you can see, the list ranges from medical interventions, to psychological interventions, to alternative therapies, to straight out old-wives’ tales. Some of the things on the list even contradict each other, as in cases where I’ve been given conflicting advice, I’ve tried to give each option a shot. I can confidently say I have tried it all.

Even if I hadn’t tried everything, this disorder is still something outside my control and I don’t need to feel guilty for it anymore than someone with cancer should feel guilty for the effect the disease has on their body.

I understand my family and friends’ worry, and I appreciate their concern and care for me. Continuing to battle against the sleep disorder in these ways isn’t going to help right now though. Earlier this year, I ended up feeling very bad about myself for having anxiety, and spent a lot of time and energy on wanting to get rid of it. All that did was cause it to escalate. As soon as I came back to accepting my anxiety as just something that is a part of my life, it drastically reduced to a much more manageable level. I feel like the same applies here. I am going to sleep walk more at the moment, as stress and sleep-deprivation make it worse. That sucks, and it’s unpleasant to keep injuring myself, but getting upset about it and coming up with new (and bizarre) ways to try and stop it is just going to cause more stress and make it worse.

With any luck, it won’t be too long until I’m assigned an assistance dog and in the meantime, I’m taking a deep breath and trying to accept the sleep adventures.

Thanks for reading,
Little Miss Autoimmune.

Monday, September 4, 2017

Acceptance, Sleep Disorders and Dogs

Last year, after things went so badly wrong with treatments for my sleep disorder, I decided not to seek further treatment. In part, this was because there weren’t a vast number of further options left to try, but it was also about the effect the previous treatments had had on me. Some had made no difference, but the emotional roller coaster of hoping they would then being disappointed when they didn’t was detrimental to my wellbeing. More often than not though, treatments had instead increased my sleep problems, and left me in a worse state than when I started. I decided that accepting the sleep disorder as a part of my life was preferable.

This was not a decision I made lightly. I had to spend a lot of time soul searching to figure out whether I was simply avoiding other treatments out of fear, or whether not seeking further treatment and accepting the disordered sleep was a valid option. In the end, I came to the conclusion that acceptance was the right path for me. 

This has been hard for some people to understand. I’ve had many people suggest a range of alternative therapies, or insist that I should go back to the sleep specialist or seek a second opinion. I’ll admit, my responses to these suggestions have not always been polite, and I do at times get defensive in these conversations. Accepting my sleep disorder doesn’t mean that I want to have it, or that I have given up. It just means that I no longer put any energy into resenting or trying to change the fact that I do have it. When it comes down to it, I don’t really believe the sleep disorder is going anywhere, no matter what I try. I can continue to put all my energy into fighting it, or I can choose to live the best life I can with it.

Accepting something negative as a part of your life is not always easy, and there are times, particularly if I’m having a run of bad nights, where it can be nearly impossible. But ultimately, I believe this is the best thing for me.

There is of course still the problem of the more dangerous aspects of my sleep wandering. My sleep specialist advised that I would need to make my environment as safe as possible. My floors need to be kept clear, to reduce the risk of tripping, and I keep all internal doors open so that I don’t run into them when I’m trying to escape scary dreams. Unfortunately, there’s only so much I can do, and I do still at times injure myself or wake up to find myself in potentially dangerous situations.

Just after things got really bad with my sleep stuff, a friend suggested getting an assistance dog to wake me if I started sleep wandering. I wasn’t 100% sure how or if it would work, but it seemed like something that could potentially help, so I applied. The waiting list for dogs was several years long though, so I didn’t expect anything to come of it for a while.

Earlier this year, I was contacted by Assistance Dogs New Zealand, saying that even though I was still quite far down the waiting list, they had a dog who they thought may fit my situation well. They began the process of training him for me.

To cut a long story short, this particularly dog did not work out for me. He had very high energy, and was quite strong, which was difficult for me to manage as I’m unsteady on my feet and don’t have great hand strength, so couldn’t grip his lead very well. This is of course one of the difficult things about having multiple conditions, as sometimes the things that help one make another worse. The fact that my conditions are so changeable also didn’t help, as I was having a particularly good day when I was first interviewed by Assistance Dogs New Zealand, and so they matched me to a dog based on that. But I would also need to be able to care for the dog at my worst, and after seeing me on a bad day, Assistance Dogs NZ decided that this was not the right placement for this particular dog, and I had to agree.

The good thing was that I had a trial with another dog, before he went to his permanent placement. He was a lot calmer, and found this very helpful for my sleep problems. While it didn’t stop me having sleep disturbances, I found that I didn’t react as strongly to them. While I was still very scared of the things I was seeing, I could tell from the fact that the dog wasn’t reacting to them, that they must just be dreams. This meant I felt less of an impulse to get up and run away, which reduced the risk of me hurting myself. Funnily enough, this has never worked with having a person in the house, as I tend to just incorporate them into my dreams, or even blame them for the strange things I’m seeing!

So, I am back on the list to be matched with another dog, though it will be a couple of years before that happens. In the meantime, I am fundraising for Assistance Dogs New Zealand, as raising $20,000 to go towards training future dogs is a requirement of receiving a dog.

This has been an interesting time for me. Of course I got attached to both the dogs who came and stayed with me, and was very sad to see them go, but it was very useful to have this experience before I receive my own dog in a couple of years’ time. I still believe that not fighting against or resenting my sleep disorders – or any or my illnesses for that matter – is the best thing for me. I can live a great life with or without health problems. Having an assistance dog is just a way for me to manage my illnesses, and live my best life, sleep disorder or not.

If you’re interested in Assistance Dogs New Zealand, and the work they do, you can find more information on the Assistance Dogs New Zealand website. If you would like to, you can also donate to my fundraiser for them on my Givealittle page. All donations, big or small, are very gratefully received 😊

Thanks for reading
Little Miss Autoimmune