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. 

Workshops

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.

Rearranging/redecorating

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