Thursday, September 27, 2012

Collecting for Arthritis New Zealand

Yesterday I spent a couple of hours collecting for Arthritis New Zealand. It was far more tiring, but also far more enjoyable than I thought it was going to be.

So many people stopped and told me their stories. People of all ages either had a form of arthritis themselves, or had loved ones who did. They all gave so generously, donating handfuls of coins and a huge number of people gave $5, $10 or even $20 dollar notes. Many people were apologetic over not being able to give more, but every little bit makes a difference. By the time I dropped the bucket off at the bank, it was almost too heavy for me to carry.

One of the stories that really stuck with me was a young mother who showed me her very painful-looking wrist, and said that she was in the process of getting a diagnosis of Scleroderma. She said that Arthritis New Zealand had been incredibly helpful to her, which was great to hear.

Many other people who were not affected by arthritis themselves, stopped and asked me my story. Though many still asked what I’d done to my leg, others realised straight away my reason for having Molly-Stick and for collecting for Arthritis New Zealand. It was interesting to note that everyone had heard of lupus (possibly from watching House!) but no-one had ever come across Psoriatic Arthritis before. One man asked me how they treat arthritis in young people, and when I said chemotherapy he said “But that’s only for lupus, not for other types, isn’t it?” so I think it turned into quite an awareness raising exercise as well.  

I ran into a few people I know, and one woman gave me a coin because she thought she’d recognised me as Mike’s daughter (I did tell her he’s not my dad.) I did have to laugh, as a couple of people I know avoided eye contact and quickly walked away (it’s okay, I wouldn’t have guilt tripped you!)

My tremors and joints were not a huge fan of the standing still for so long, so I did get rather shaky and probably looked like I was doing the needs-to-pee dance, as I shifted around trying to keep my joints from locking up. The bucket did end up on the floor at one point, as my hands decided they weren’t having any more of it, but some lovely ladies helped me out picking it up and reclaiming the coins that had made a break for freedom. Another very nice guy offered me an energy drink, to keep me going, however I decided that would probably not be the best idea seeing as I was already shaking!

As I said, the day was quite tiring. I was supposed to be collecting from 1pm-2pm but it wasn’t until about 2.30pm that I realised the time. As there was no-one available to collect after me, I decided to stay until 3pm as there were still many people donating. In fact, it became rather hard to leave as people were still coming up to me with coins as I was packing up to leave. I had to go into town to get a blood test straight after, then managed to fall asleep sitting upright in a café! 

Thank you so much to everyone who donated, or came up and talked to me. Thank you too, to all the staff at New World Thorndon and Arthritis New Zealand who did such as great job of organising all of the collectors.

Little Miss Autoimmune

Saturday, September 22, 2012

Sick-Cycle Carousel

You go through many cycles with chronic illness. Flares. Remissions. Good days, bad days, round and round and round.

I knew posting about things being good was a bit of a risk. There’s always part of me that thinks The Universe is going to go “Oh, you thought things were going to stay good? Haha, nope! Here’s a flare.” And that did kind of happen a little bit after I posted about how well things were going.

A couple of days after writing this post, I had my monthly blood test and my labs were out. Considering my labs are usually normal even when I’m badly flaring, it was a bit worrying. Since then, most of the things that had got better stayed better (Yay!)... but some other new symptoms popped up*. And so the cycle goes round and round and round.

Another cycle that will be familiar to many others with chronic illness is the grief cycle.

I’ve been struggling quite a bit with dropping things lately. I’m not entirely sure what’s causing it – my guess would be a combination of pins and needles, tremors and raynaud’s. Whatever it is, I’m decidedly more fumbly that I used to be. And my poor dishes have not been faring particularly well! Last count, 1 glass, 2 bowls, 1 mug, 1 dinner plate and 1 side plate have fallen victim to my hands. Plus a few other things are now either chipped, or have learned to bounce. Even when the crockery itself doesn’t break, just having the contents go everywhere can be annoying enough. I really wasn’t sure whether to laugh or cry when I dropped an entire glass of almond milk into an open drawer. Don’t be fooled by the almond part – after a couple of days, it smells just as bad as normal milk!  

So, after being upset about this for a while, I got this pretty awesome drink bottle (or three of these drink bottles to be more accurate.) And on the day I bought these, I was really happy, as I now had a solution to this problem. But then I had to grieve for a while, because finding a solution made me think again about the fact that there was a problem in the first place.

Similarly, I’ve been avoiding ordering drinks in cafes, or having anything other than water out of my bottle at other people’s houses, due to not wanting to make a mess or break other people’s stuff. I was thinking about this today, and I realised I could easily ask café staff or friends to put drinks in a mug or paper takeaway cup. I might get a few awkward questions as to why, but with Molly-Stick around I get awkward questions anyway.  It’s not a perfect solution, as even with the handle I do sometimes drop mugs, and takeaway cups are hardly environmentally friendly, but it’s a solution none the less. And so again, I had to grieve about the fact that I had a problem that needed a solution.

Remembering that it is a cycle does help. Bad days suck, but good days are part of the cycle too. And the cycle of grief, it is a bit of an emotional rollercoaster to be upset by both the problem, and the solution to the problem, but I’m kind of an emotional person. If I wasn’t getting upset about that, I’d probably be crying watching Shortland Street, or something equally ridiculous (by the way, totally cried watching Shortland Street last night.)

There’ll be good days, and there’ll be bad days, and I’ll cry about stupid things. But sometimes I’ll laugh about stupid things too. With the almond milk, I settled on laughing.

Thanks for reading
Little Miss Autoimmune

*I will post properly about this at some point, but still a bit too close to it to talk properly about it yet.

Monday, September 3, 2012

Paying it forward (with ninja baking!)

Quite a while ago, I posted about the random acts of kindness members of the public had shown me. I'm a big believer in paying it forward, but I'm not always sure of how to go about it.

Recently, I read about The Sisterhood when a friend posted the link on facebook. After reading about the ways other women in New Zealand were joining together to commit random acts of kindness, I decided I wanted to be a part of it.

This weekend, one of my friends and I (along with many other women around the country) took part in some ninja baking. I can't say we were the most stealthy of ninjas - Molly Stick isn't exactly built for it, and the sheet of paper with directions on kept escaping in the wind meaning mad dashes chasing after it. The mad dashes were of course made by my friend, not me - Molly Stick isn't really built for that either!

Even with our less than stealthy ninja-ing, at the end of the day we had delivered brownies and cupcakes to the mail boxes/doorsteps of three deserving women, who had been nominated by their friends. We don't know these women, though I did find out later that the two women I had nominated had also received baking from another ninja baker. (Yay!)

This was a great experience to be a part of. If you're in New Zealand, please check out The Sisterhood page and consider taking part in the next random kindness adventure.

:-) Little Miss Autoimmune