Claire

Let’s change it up.

This morning I came across this video, Claire Wineland on How to Live When You’re Dying, from an amazing young woman, and she has a very fresh and inspiring view on living with an illness that is incurable.

I almost feel like I don’t fit in any category with her because her illness is very physical and her life expectancy is so short. Yet here she is talking about the pitfalls of dating, the joys of living overseas and travelling, the experience of going to university, and the fun of going out with friends. Almost as though she wasn’t sick.

How’s that for a radical life? Putting your illness in the corner, and going on regardless.

She embraces a life of living so that when she dies, however soon that may be…and compared to most of us its very soon, she will have lived a full life that she can be proud of. Her fears? That she won’t have lived. That her illness will have been her whole life. That she lived to die.

I tell you, I admire this girl so much! It is hard not to think about your illness all the time: how it affects you, how its changed your life, what you don’t have compared to other people. And I don’t have a life expectancy date hanging over my head! Sure, I’ll always have this illness, and there’ll always be issues to deal with, but death is not a guaranteed part of the package. Not any more than any other person in the world.

Check out this girl.

Whether you have a chronic illness or not, her take on life is so refreshing and I feel like it gives me a kick in the pants to try a new philosophy. This is not about being fake and pretending nothing is wrong. That is never helpful, or useful. Something is wrong; lay that on the table to begin with. But life goes on. This is about finding a way to live around your illness, and still living a fulfilling life.

It will always be something of a struggle to push past illness to life. But it can be done, at least some of the time. So let’s give that a go!

Find a way to glow

 

For an extended version of Claire’s interview video, check out Cystic Fibrosis taught me there’s no “normal life”
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Canberra Day 66

[Wednesday November 16th]

After such a great, but late, night last night I had a bit of a slow start but in a good way. Not because I was feeling depressed, but just because I took my tablets late and am still a bit bombed out. I was excited for this morning. Music at midday with the Royal Military College Duntroon band was on at Canberra Theatre Centre (or so I thought) so that got me out of the house and on my bike at 10.40am for an 11am start. Unfortunately when I put it in my diary I put November instead of December so that was a big let down, and now what to do next? I think I might have gone home and sulked but the Canberra Museum and Gallery happened to be right across the square so…why not? It’s been on my list, here I am right in front with my bike locked up and nothing else on my ticket, so here we go. And actually I’m really glad that I went.

It’s a really interesting place, as museums always are. This one is about the size of 3 exhibition rooms at the Melbourne museum but they pack the content in. The first exhibition was Canberra stories, lots of old tales from the foundation, the war, the building of the city, and all kinds of bits and pieces. Then the UNESCO documents exhibition: famous documents of all kinds, like the Mabo case and diaries, war documents, environmental and historical documents of all kinds! Lots indecipherable to me in the old fashioned joined writing, but fascinating just to see documents so old and to think that back then absolutely everything was written by hand! Then an Australian record in the Guiness book of records for the largest collection of Doctor Who memorabilia! I’ve never watched the show so it was all a bit lost on me, but the amount of stuff the guy had collected was impressive by itself: DVDs, books, Tshirts, posters, mugs…the list goes on! And finally a delightful collection of Sydney Nolan paintings. I’ve never really paid them much attention before, but that guy had the best sense of humour in his paintings! They were all Kelly era paintings but so much comical cheekiness comes across, like the police whose diary page says he had to hide out in a wombat hole, but is actually shown diving into it head first with legs way up in the air and totally visible! If I had one of Sydney Nolan’s paintings in my house I believe it would make me smile every day! Of course if I could afford one of his paintings…

2016-11-16-10

A terrible photo of a great painting…might have to go back for a better one!

The afternoon was a bunch of jobs: trying to find out where our mail is going goes it ain’t coming here, it’s not in Melbourne, it’s not going to our last address, and I don’t believe they’ve received anymore at the office here. Australia Post! Then insurance forms for my next monthly payment, some blogging (not that you’d believe it with how behind I am!), a load of dishes, a load of washing, having a look at some new bird photos and that was all she wrote. I’m pleased with today. I’m glad I got out, even if it was a false start. I still made something of the day and I can be proud of that. Something to remember when I’m feeling like I do nothing and am no one. I found one more thing that makes me smile and that is worth a thousand other things in this world, in my world. 

I’m sort of feeling like I’m crawling out from under a rock in some ways, like I’ve been checked out of life for a while with my head in my own problems and not seeing anything else. But just now I caught my husband’s eye over dinner at our tiny 2 person table and realised that while eating on the couch is easy in our place it just isn’t the same as sitting across from my love and having a conversation. I need to pick myself up out of my own dribble and pay attention before life passes by! 

Anything!

Lately I’ve forgotten how much nicer it is to spend my day doing something, rather than nothing!

When I’m down, flat, depressed, I just can’t think of what to do. No ideas come to me, I think and think and it goes nowhere. I wake up in a fog, get up only when I can’t force myself to sleep any longer and lying there gets unbearable, and spend the rest of the day using as little energy as possible!

This is reflected in all the things that I don’t do. I don’t put the used knife at the sink or in the dishwasher; it stays on the bench with the butter and the spreads that should be put away in the cupboard. The bird bath gets filled up with rain or nothing, and the seed feeder empties and then sits empty: the very worst kind of bird feeding there is that; supply then cease. The dirty clothes can’t make it to the washing machine, I drive instead of public transport or walking. The ironing sits, and sits, and sits until my poor over-worked husband gets fed up and does it, while I watch in shame and guilt and secret gladness that it’s done, at least for today, until it piles up again. I do so miss my ironing lady!

I have lists of things to do, but doing them is more painful than transferring them to tomorrow’s to-do list. It’s been a few weeks of this kind of la-la nothing-ness, and it’s been getting tedious.

So I decided to muster my strength and drive myself the 10 minutes up to Doncaster Shopping Centre to go to a couple of stores. Did I remember that it was the school holidays? No, unfortunately! But never mind. Turns out, neither of the two stores that I went to visit exist there anymore!! This is such a typical palm to forehead moment from me that it has become laughable to my husband and I. A phone call to tell him such a story gives him a great big laugh and helps me feel a bit less stupid and wasteful of my limited resources.

Then he said this helpful thing. Oh well, since you’re there, take the chance to look around at any other clothing you need/want?

Usually I’d be straight back to my car and home to safety, but for some reason this time I thought why not? I looked up one of the stores I had come for, and it turned out that their brand was stocked in a couple of places although their name brand store didn’t exist anymore, so I went off looking for those stores and 3 hours later I emerged having had a pretty good day! I’d bought a pair of boots that I really liked and had been thinking about looking for/buying for a while; actually quite a long while! It all happened kind of painlessly. I’d even talked the staff into giving me 50% off instead of 30% because of a miniscule defect! Quite proud of that one. Bought a couple of fat tops, but not in the fat section; in the young cool people’s section. I’d chatted to service staff, talked to a couple of shoppers spontaneously and tried on every shoe I vaguely liked. I’d even photographed some shoes I’ll think about if I get a job or at sale time, like I’d ever remember that I’d taken the photos or where they were from! Another palm to face moment: I was meant to go to one department store to find the brand that I was after, and I spent all afternoon in the other one!! No wonder I couldn’t find what I was after! Oh dear! Again!!

So there it is, just by getting myself out of the house and being willing to/having the energy to push a bit further out of my comfort zone by staying out, several good things happened and I felt like I’d lived a day in the life of a normal person, shopping the sales in the school holidays.

That was the 7th of July, 2016.

Now, on the 27th July I’m in a totally different zone! A happy, energetic, functional, even efficiently effective zone! It’s so good! I truly literally have not felt this good since I got sick. Let’s rephrase and say that I’m feeling the best that I can remember since early 2013!!

It sort of makes me mourn all of the time that has gone by in the last 3 years – wasted hours and days and months, but they can’t be recovered so I just have to put them in the past, and put my attention to the excellent present that is making me feel good.

This is a solid proof, once and for all, that justifies me for defending myself over these years: my disease bipolar is all about the chemicals. When the chemicals are balanced, this is what I can be like, my best self.

When the chemicals aren’t right, I can bust my gut to be better, and exhaust myself in the endeavor, and get nowhere. But finally, all the hard work, all the psychiatrist’s appointments, all the tablets, all the heartache, all the problems and difficulties are just faded away and I’m well! My husband is so relieved. I think we had just about resigned ourselves to the fact of our lives just being sucked into the vortex of this evil disease. But now we know. We finally know that it doesn’t have to be that way. It can be better, to the point of almost normal. And I’ll take almost normal any day!

Of course the story isn’t over. This isn’t the end. This is a good cycle, but it’s still a cycle. That’s how bipolar works, one cycle followed by another; good following bad, and so on. Our aim is to cycle less often and less severely. Proving that I can get to a good cycle is just such great news, a huge relief and gives hope for the future. The medicines do their part, my psychiatrist and GP do theirs, all of your support does its part too and I do mine, and sometimes we hit the jack pot! Let’s celebrate it while it lasts, and know that when we go down again we’ll have more hope for coming back up!

 

 

Magical Monday

New bird alert! New bird alert! Excitement, excitement!

And what a relief it is on a day like this, a week like this, to feel excitement!

I haven’t been having a very fun time of it, to be honest. Everything is a bit or a lot hard, tedious, effortful, difficult, troublesome, not worth it. Getting up is a drag, showering is a hideous ordeal, eating is just tiring, deciding to do anything is impossible! I’ve been sleeping a lot, avoiding thinking about my to-do list a lot, and just skimming through the days til bedtime.

It’s not fun!

But here is an effort, however tiny and minuscule, yet enormous and huge, to get out. Just for a little bit. Just to have done something other than be at home; unproductively, unsuccessfully, un-impressively at home.

It’s all in my new direction from the psychiatrist – getting outside, enjoying the sunshine. I’m trying to do my bit since he has turned my life around. I owe him that much.

I realise I also owe that much, or more, to my husband as well so here it comes Beautiful: I promise to try your caring suggestions and get a bit motivated and interested if I can!

Ah, IF. The stories you could tell…

So in the late afternoon on Monday I gathered myself up, stuffed myself into some clothes (hopefully matching!), got the car out and took myself down to my old favourite birding spot; Blackburn Lake Sanctuary.

I can’t believe how long it has been since I was down here last! I’m definitely going to make more of an effort to get here more often because let’s face it, in suburbia anywhere it’s a great privilege to have some green spaces nearby for an escape/retreat/sanctuary/reset.

And every time it rewards me so greatly. This time I didn’t even get past the car park for the first hour!

I heard some lorikeets, assumed they were Rainbows but then caught a glimpse and they had shorter tails and red on their head! New bird!!!!

They were truly beautiful, and fun, and acrobatic, and shrieky, and a challenge to get still enough for a decent focused photo!

Honestly I felt as much satisfaction from changing the settings to get a better picture as I did in finding a never-before-seen-or-photographed-bird!

I changed to shutter mode to still their actions after using the programmable mode gave me a too-slow shutter speed and was too slow to focus, and was too dark and too grainy! Then I had to keep adjusting the ISO and exposure as I followed the birds around depending on whether I was shooting up at the outside of the tree in full sun, shooting under the canopy up into the dark shadow or straight across at a neighbouring tree…etc.

I was pretty proud of some of the photos I got. I always recognise that chance and luck have quite a bit to do with the photos, but having purposely set the variables, I do take pride in the fact that the photo was taken by chance and the settings were perfect for that chance!

So here’s a few of my favourites! Hope you can enjoy looking at them as much as I did taking them!

We start in some gorgeous wattle trees where there’s some pretty fierce competition from cranky Red Wattlebirds and Noisy Miners, plus some quiet guests in the lovely Galahs.

New bird! The gorgeous Musk Lorikeet - vibrant red forehead, cheek and tip of beak, wattle

New bird! The gorgeous Musk Lorikeet – vibrant red forehead, cheek and tip of beak

Musk Lorikeets are apparently notoriously hard to find because like other lorikeets the only time they’re quiet is when they’re eating! Add to this their preference for eating on top of the canopy where they not only blend in with their green underbelly but are hidden by layers of branches and leaves! So I feel pretty lucky that they choose these low growing trees to feed from.

Pretty pretty pretty! I love the yellow patches just above the wing and the blue head!

Pretty pretty pretty! I love the yellow patches just above the wing and the blue head!

I always appreciate it when my birds kindly move to the dead trees and branches – it’s very convenient to me! Thanks for the photo op!

The perfect camoflage - despite the colourful patches, when the lorikeet turns its back it becomes invisible!

The perfect camouflage – despite the colourful patches, when the lorikeet turns its back it becomes invisible!

This is a photo that makes me really proud of what I have achieved! To shoot past all of the sticks and leaves to get a clear focus on the bird is a very tricky thing, and something I wouldn’t have been able to do before my photography course – kudos to Master Your Camera’s Wendy!

This is a photo that makes me really proud of what I have achieved! To shoot past all of the sticks and leaves to get a clear focus on the bird is a very tricky thing, and something I wouldn't have been able to do before my photography course

The dangling upside down antics of these Musk Lorikeets are so delightful! In this shot you can make out the brownish yellow patch on its back

This photo is typical of my excitement when I find a new bird. At first I just snap away furiously to get a shot, any shot. Then I realise they’re not going anywhere and slow down and start adjusting the settings. Then I can take a breath, stop and actually look at composing a shot for the best photos of the day – this is just about it!

This photo is typical of my excitement when I find a new bird. At first I just snap away furiously to get a shot, any shot. Then I realise they're not going anywhere and slow down and start adjusting the settings. Then I can take a breath, stop and actually look at composing a shot for the best photos of the day

Always dangling for the best bite to eat! Love all of the different colours.

One downside of shooting through the exterior is that you can get foggy patches in your photos!

I love this photo for the underbelly of the bird, something that isn't always photographed but I find it fascinating!

I love this photo for the underbelly of the bird, something that isn’t always photographed but I find it fascinating!

Then the Red Wattlebirds and Noisy Miners got too overpowering and my new friends all flew off squawking and squarking! Luckily they didn’t go too far and settled in a nearby eucalyptus and a different wattle tree. This was perfect as they were in the clear path of the afternoon sun which always makes everything look beautiful and good as new!

And towards the end I get this shot! Love it, this shows so much character of this bird!, gum tree, eucalypt

And towards the end I get this shot! Love it, this shows so much character of this bird!