Tuesday, 2 January 2018

2017: How it was for me

Dear all, Happy summer solstice, religious celebration of the birth of historical rebellious nice guy, beginning of a new year on the western calendar and holidays for those of us in non-essential professions!

Here is my synopsis of the year for all you internet friends and strangers across the globe.

The short version:

"Pretty meh, but not terrible, I'm still happy to be alive".

The long long version:

Yeah, so I'm still sick. That sucks. At the start of the year I was still expecting the recovery mechanisms to kick in some time soon. But they haven't yet, so I've had to try to come to terms with this incapacitation and houseboundness being an indefinite thing. That was, and is no easy task.

On average I was been sicker than 2016, but without the massive fluey crashes where I was unable to get out of bed last year, and needed to be rescued with multiple deliveries of soup from friends. Maybe because, with help of my wrist-monitor, I'm better at radically pacing myself now, to avoid the massive dumps. I have also gotten more used to this new way my body is. Ridiculously reactive to minimal stress and exertion. But although pacing may have helped me manage things, it hasn't been a cure. Yeah giant un-composted turdballs. It's stupid! But ah well.... shit happens, and it is what it is.

Below is a graph of my number of steps per day over the last year, with my average for the year being 1763.

May was definitely the suckiest month. 

But, there were many silver-lined moments..... (other than living in a house with this stunning view of kunanyi / Mount Wellington!)

Many people did many, really kind things for me, like me bringing me food and wool and clean laundry and library books and head massages and building me height adjustable kitchen chairs, fixing our toilet, cleaning or even just sending supportive messages. I am really grateful for the continued help from you lot while I'm stuck in this invisible jail. You're all THE best. Thank you!

So what else did I do with a whole year of being mostly horizontal?

I faffed around on Facebook tons, which was both good and bad for my mental health. It kept me connected, but sometimes it made me feel more sad about missing out on life, and sometimes even more sad for the people who have it far worse than me. Like cancer, war, suicide and even worse chronic fatigue. I joined an online support group and have received a lot of generous advice from fellow chronically sick people across the country. But this also confronted me with the reality of how long and how bad people can have this illness for. I got myself in the newspaper (http://www.themercury.com.au/news/tasmania/active-tasmanian-parks-and-wildlife-ranger-struck-down-by-chronic-fatigue-syndrome/news-story/f92175808351500bb3946a9da7251476) and some friends organized a film screening of Unrest (https://www.unrest.film/), to try to raise awareness about how this debilitating disease, previously ridiculed as "yuppie flu" is in desperate need of more research funding, and belief from doctors and social security organizations. Scientists are now saying that a simple test for me/cfs is not far away, and that should help our cause. In the meantime it's a diagnosis of exclusion.

So exclude we did! My parents gave me lifts to the doctor or for blood tests 33 times (I only left the house 38 times in total!). I saw nine different health practitioners. I lay on the floor in their waiting rooms. I researched and researched cfs/me online, and sometimes got told weird and conflicting things by different doctors and doubted myself and doubted them and researched some more. I swallowed hundreds of different pills and supplements, sometimes scientific in my approach, but mostly not, just hoping that something would help. I obsessively kept track of my steps, diet, nutrition and my heart rate with the really annoying beeping wristband, made graphs and looked for trends in the hope of gaining some control over my health. I wish I knew what was going on in my body and could make sense of it. But I still don't really know, other than going to the doctor always made me tired!

I slept and napped a lot, often with the help of valerian herbal sleeping pills, when I got too tired and wired to sleep. These are the only supplement I've ever bought that I can say actually work, and they are my beloved and precious savior.

I read kids books and took up watching tv (iview) again for the first time in 17 years. I crocheted,  podcasted and mostly managed to cook my own food and clean up after myself in the kitchen, even if I had sit on the floor to do it. I started a paleo diet that's supposed to be healing for the gut, in case that is related to my problem, and grumbled about it, but mostly ate really delicious food. My hair grew back and I gained weight from doing zero exercise. I did intermittent fasting, and intermittent cheating on all the diet rules, especially when I was over-tired. I ate a lot of turmeric and sauerkraut and kale.

My favorite month was April because that's when I felt the least sick and I got to go for slow walks and wades at the beach everyday and sit on licheny boulders and watch the water and imagine I was swimming around with the cormorants. I spent a lot of time lying on the deck at home doing imaginary qigong and wiggling my toes around while looking at the clouds moving across the mountain.

I survived on Newstart for the second year, applied for and was rejected for the disability pension and spent far too much time listening to centrelink hold music to figure out how to appeal that decision.

I felt sad, bored, frustrated, scared, desperately missing all the joyful parts of life, and sometimes guilty and like a burden. I didn't laugh very much. Or do any of the things that used to make me happy, like swim, walk, ride my bike, or even have the energy to go and sit in the bush everyday and count plants like last year. Nor did I write on Facebook or this blog as much, because my brain has mostly been submerged under murky cfs sludge waters to varying depths. I prioritized my limited mental capacity to the essential communications of life and sharehouse living. (19 different people lived at my house over the year! This wasn't so easy for me, but I know that I'm not easy to live with either, and I am grateful to all the different housemates for putting up with my substantial limitations, noise intolerance and all the sick gloomy, grunty, grumpy grouchiness.)

But I was also surprisingly okay a lot of the time. My favorite feeling in the world has become 'not so sick', which happens some days, although the invisible energy boundary is always still there, with its severe punishment for crossing it. Some happy things were that our garden got very heartily mulched and looked after again because a previous housemate moved back in. It's looking really alive and good. And some lovely people planted natives on our front verge for me, including trigger plants, one of my favourites.

So yeah, 2017. Really not wonderful, but not terrible either. I guess I'm learning a heap more about life . About the vulnerability of human bodies, disability, loss and things not turning out anything like you'd hoped or planned or expected. I wish I didn't have to learn about this crappy stuff. Blissfully ignorant and arrogantly healthy would've suited me. But I'm also grateful to be okay and looked after and I still like being alive, because sometimes the cfs chains loosen and I don't feel so sick, and that feels really good. Or the winter sun or summer breeze is really warm and delicious, or the sunset behind the mountain is outrageously take your breath away stunning, our little cherry tree produces a ton of sweet red fruit, I hear the black cockatoos coming down from the mountain or the sound of a boobook owl from the forest amongst the frogs at night, or the air smells like rain. And that makes everything ok. I still might get out of this bloody sick body jail one day. (Although the things left to try on my list are getting more and more implausible and 'woo-woo'!) Maybe I'll be one of the lucky ones and it will just run its course. But it doesn't look like shifting just yet. I can't yet confront the idea of being sick like this for decades, but I can do it one day at a time.

One more happy thing is that I'm spending the last week of the year in a beautiful bush hut by a creek surrounded by wildflowers, tree-ferns, moss, native birds and pademelons, with a view of bruny island. It smells really good here and there's chirpy little honey eaters which makes it sound like the Tasmanian alpine country. It's really very nice. I have excellent friends.

All the best for 2018 everyone. Look after yourselves, remember to eat your veggies and have enough rests! Hopefully, whatever challenges or rude shocks we are delivered this year, there's plenty of joyful moments interspersed, and we can all do it one day at a time. xxxx Jen

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