Living in Bucket List Mode

Don't be alarmed by the title - I'm not dying, or at least not any faster than the usual!

Some stuff has been happening with my health, and I haven't posted about it for a couple of reasons. One because it's still all in the stage of "this will probably all turn out to be nothing" with only a slight possibility of it turning out to be "something", and two because as is just about always the way in life, ALL OF THE THINGS both good and bad happen at the same time, and finding the time and spoons to sit down and write a blog post becomes of low priority.

In the past when things have gotten bad with my health, I've tended to feel quite closed off towards new things or people. I never want to take on something new, or start a new friendship, if there's a chance that I will end up having to abandon it and letting people down. But as I say, when my health is at it's worst, that's when the good things tend to happen as well. New ideas, opportunities, or people appear in your life, right at a time when you're not sure if you're well enough to fully commit to, or appreciate, them.

In the past few months, I've had some really cool work and writing opportunities present themselves in my life, and this time around I've felt a lot more open about exploring them. This is in part because I've been thinking a lot about bucket lists lately. Not just for things I want to do before I die, but for things I want to do before I lose the ability to do them. I've come to accept the fact that my diseases may well progress. This may mean that I lose functions, or find things a lot harder to do than I do now. I'm already seeing this. As my joint symptoms have become active again, I'm finding it more and more difficult to do tasks that were easy a few months ago. But they're not impossible yet, so I'm keen to keep experiencing all life has to offer while it stays that way. I'm living in Bucket List Mode.

I'm also more open to exploring opportunities now, because I know myself well enough to be confident that I will do everything possible to avoid letting other people down. My doctor told me the other day that she thinks I've always been very honorable in the way I handle my diseases in relation to other people. I hadn't really thought of it like that before, but she's right: when I take something on, I do what I can to see it through, even if I do become really unwell during the process. And if it gets to the point where it's absolutely not possible for me to continue, I do my best to lessen the impact of that on other people. So even if this does turn out to be "something" I can still feel reasonably confident that I won't end up letting anyone down by taking these new things on.

So here's the deal with my health at the moment. A few weeks ago, I had an odd episode where out of nowhere I experienced a sudden-onset, blinding headache, and started vomiting - hugely bad timing, as I was away for a hens weekend at the time. As a non-drinker, I didn't think I would ever find myself vomiting uncontrollably while dressed in a Big Fat Gypsy Wedding costume and tiara, but there I was. I guess in a weird way that's a life-experience to cross off the list! I assumed at the time that it was down to my wonky-donky blood pressure, or perhaps just the heat. But over the next week I began to experience some other weird and slightly alarming symptoms. I struggled to hold a conversation, as I couldn't find words or forgot what I was saying. I was having trouble reading and writing, and couldn't work my computer. Most confusing, I managed to get on completely the wrong bus, despite always catching the same one. I wasn't all that worried until people kept starting sentences with: "Now don't worry, but..." (there's nothing that tells you there's something to worry about, more than people telling you not to worry!) so I made a doctor's appointment.

By the time I got in to see my GP, things had improved, and I was more or less back to normal. It's quite likely that we won't ever know what caused this episode. My GP said it could be down to my blood pressure, as I'd thought, though it was normal at the appointment, or perhaps an atypical migraine, though the headache was bi-lateral. The slightly more concerning possibility she raised was of it being Cerebral Lupus (inflammation in the brain, caused by SLE.) She said she has another SLE patient the same around the same age as me, who's experiencing very similar symptoms, though her's have been reoccurring episodes whereas this was a first for me. She also gave me the "now don't worry, but..." speech, so I know that this possibility is not exactly ideal. The plan of action is for me to have an MRI at some point, to see if we can figure out what's happening. Unfortunately my insurance will cover an MRI but only if I'm referred by a specialist not my GP (yep, we have insurance issues in NZ too!) and the public system will take a really long time.

So for now I don't really know. I'm honestly not really that worried, in fact I'm more concerned about the idea of actually having the MRI than of any possible negative results. I don't really think it's going to show anything. I strongly suspect these symptoms will remain a mystery, but even if it does turn out to be something I'll cope with it. In the meantime, I'm cramming in all the good bucket-listy things, because either way, there's a lot of them to fit in.

Thanks for reading,
Little Miss Autoimmune

Opportunities Don't Always Knock

Arm-Knitted Scarf

I started out trying to write a blog post entitled “Things I learnt in 2013” but I found that everything I wrote was coming out simultaneously too personal and too vague, too negative and too flippant, too preachy yet too much like I didn’t have a clue what I was talking about either. So I decided to change tack and just talk about one thing in particular.

Yesterday I held an arm-knitting lesson for some of my friends. This was a culmination of several opportunities I’d been given last year, which might have been very easy for me to miss or walk away from because I was too unsure of myself to follow up on them. Last year, I learnt how to arm knit after seeing a picture of somebody doing it. Initially I dismissed the idea of trying to learn, as I thought my hands would be too bung for it. But the idea stuck with me, and after a bit of persistence, I found I could adapt and improve on the original techniques, and had soon mastered this new skill. A couple of months later, I was interviewing to take over tutoring the Writing for Children class at the Wellington High School Community Education Centre, and the subject of knitting came up. I mentioned the arm knitting, and was offered the opportunity to create a class in that too. 

I’m not great at asking people for help. I mean, I am for the big things. Like the “I am on the floor and cannot get myself up without assistance” or the “I need you to take me to the hospital now” type things, but the day to day stuff, the things where it would be nice to have help but it’s not 100% necessary, I sometimes find harder to ask for. As I’m writing this, I realise probably the reason I find this harder is because of those big things. It feels like too much to ask for the other stuff, when the people in my life help me out so much already.

But last year I learnt that family, friends, and even complete strangers, are often very willing to help you out, but they don’t want to seem intrusive. Sometimes they’re just waiting to you to ask. To give them the opportunity to help. This was really driven home to me when I was shown incredible kindness by a complete stranger, who then thanked me for letting her help me, then again when I asked a family friend if she could give me a lift to a doctor's appointment and she responded “Thank goodness, finally you’re letting me do something for you!”

Anyway, when I told friends about the arm-knitting classes I was going to be teaching some of them were really interested in the idea, especially when they saw the scarf I’d made (pictured above.) I was a little nervous about the idea of teaching it for the first time though, and one of my friends suggested getting a group of people to come around for a practise lesson. 

For a while, I felt just as nervous about asking people to come and be my guinea-pig students. What if they didn’t want to come but felt obligated? This very much fell into the category of something that would be nice to have help with, but it wasn’t anywhere near 100% necessary. In the end I decided that if people didn’t want to come, they were perfectly capable of saying no, just as I’m quite capable of saying “no thanks” to things I’m not so keen on doing. Another thing I learned in 2013 was that being honest with people, even when you think it might be something they don’t want to hear, is an opportunity for both of you to communicate more effectively!



Arm Knitting in Progress

In the end, the lesson turned out to be heaps of fun. I came away feeling much more confident about teaching the classes, and my friends came away with a new scarf each, having learnt a new skill, and (I hope) having a fun afternoon doing it. By inviting people, I’d been giving them an opportunity to come learn something new and socialise, not forcing them to help me against their will. The ones who wanted to come came, and the ones who didn't didn't. Simple as that.

So the big things I learnt in 2013 were to explore opportunities when I notice them - they might turn out to be nothing, or they might turn into something really cool – and to not be afraid of asking people for help, or inviting them to things. Opportunities don’t always knock. Sometimes they’re just standing there quietly, waiting for you to notice them, and if you don’t, they’ll just let you walk away without saying anything. 

Thanks for reading,
Little Miss Autoimmune