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

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

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