Friday, 24 January 2020

The decade

Hmmm, reflecting on the decade hey, a challenging undertaking. Initially I thought, “nah, I’ll do it when I turn 40, because age 26 to 36 seems a bit weird......(and maybe it gives me a few more years for something significant to happen)”. But then my brain ticked over a few things....

45% of it fatigued, the rest running round like a crazy person doing all the things and having all the adventures with my pack, bike or sea kayak, which was very fun. CFS the mystery illness, introducing me to slowness and health humility, vulnerability and dependency, with over a year housebound between 2016 and 2017. 

90% of it in Tasmania, still my most favourite island. A long, lonely, hot 8 months in Indonesia in 2012, and a few little pops over to the mainland for adventures, weddings and funerals. It was always good to come home to kunanyi/mt. Wellington. 

No marriages. >80% of it single, and the pros and cons of that, in contrast to the mostly long-term-partnered previous decade. Was initially pretty sad about this, but when I got really sick and the option of going on dates or whatevs was wiped off the table, I kinda felt relieved to be free of the niggling shoulds, needs, doubts and wants about finding a person. Nowadays I’m pretty content, and/or still a big wuss and/or still a but too sick for the emotional intensity of the whole endeavor. More open to the idea of non-conventional relationships too. And grateful for my family and community for looking after me when I was really sick. 

No kids, and coming to terms with that most probably not happening. Four new nephews and nieces, but they are far away and I have not been a very involved aunt. Many many friends’ kids, and how that changed, or sometimes paused friendships. The waxing, waning and changing of various friendships and the influence of CFS on that. 35 housemates: they come, we share our lives, they go. The rise of Facebook to global dominance. In 2010 I didn’t have a smartphone or home internet and did all my internetting at the library, max 2 hours a week. Big big big change there! Screens! Agrhgh! 

Mostly casual field ecology and seasonal parks work, a couple of years of salvaging through the plentiful waste of our society at the tip shop. Nothing directional in my career. Decided I needed more employment options for an aging body than running round in the bush with a heavy pack and/or trying to work towards a hen’s tooth rare, hotly sought-after ecology job in Tassie, that would be mostly on a computer anyway. So against all my parents advice (who were both teachers), I did a teaching diploma in 2015, but got sick in early 2016 and haven’t used it yet. Not sure what I’d do if I got better. I discovered teaching involves an incredibly epic amount of work, not to mention emotional labor. Maybe I’ll try it part time one day. 

Maybe lots of intangible stuff. I listened to a lot of podcasts and read a lot of books over the decade, so surely I have learnt many things and became far more wise! That’s how it’s done, isn’t it? 

The one ‘adult’ achievement = house, swimming pool and garden co-ownership since 2014. We have increased its green area by at least 75% I reckon. Fruit trees, wicking beds, rewilding the pool and the verge. Gardening has probably been entirely uneconomical for me, in terms of food produced for money and effort, but home grown things are always so exciting and far more delicious than shop food! Feel very lucky to have bought a property just before prices went really silly. Owning a house is a lot more work than renting, coz of ongoing maintenance and things that break and cost lots to fix, but overall having a home and garden is great. 

Source, our food co-op and community garden of which I was a co-founder has been open since 2010. I haven’t been involved much since 2015, but I am chuffed and proud and grateful that many other people have loved it and taken on the work of keeping it alive and thriving. I wish I could say I/we have achieved more in healing humanity’s relationship with our environment, to be more sensible and less shit. I think that’s the most important work there is to be done. A lot of the things I was doing last decade are a now much more mainstream now, like waste-minimization and worrying yourself sick about climate change. It’s still not enough. But it can be so hard to figure out what to do to get us to where we need to be, without being counterproductive. When I was healthy I just went out and did shit anyway, but nowadays I sit and home and worry about it all a lot more. You can never know the consequences of your actions though. A girl who is now one of the power-houses of the youth climate movement told me she was inspired by a school-workshop I helped run back in the early part of the decade. So while I take very very VERY little credit for her becoming so awesome, maybe those three days were the best thing I did  

I‘m greyer and fatter, but the latter I can mostly blame on CFS, and I’m hoping for a cool-looking silver streak with the former, as it’s mostly over my right temple. I did a somersault today. It wasn’t a very comfortable experience. I wonder if I’ll still be able to do that in 10 years. As well as I wonder if our house will still be here or will have burned down, and what the sea level rise and refugee situation will be like in 10 years. 

It’s pretty worrying, but it’s still good to be alive.
My hopes for the 20s are: Carbon drawdown, unplasticed oceans, reduced inequality, lots of laughing, berries, snorkeling and apricots.....

Improvements - but I do not know why

Getting better is just as much of a mystery as getting sick. 

I’ve been moved to a lower security jail. It’s a bit bigger in size, allows more freedom and activities, and the guards are lazier with their punishments. It’s only a small improvement when measured against what I used to be able to do, but it’s definitely there. There was a period of time in my almost four years of CFS imprisonment, where the punishments for even just thinking about poking my nose outside my safe zone were severe, arbitrary, often delayed and unpredictable. It seemed like psychological as well as physical abuse. “6 weeks in solitary with ball and chains shackled to your glands for you, you terrible, stupid, bad-at-managing CFS person”. Now it’s like the guards can’t really be bothered interrupting their game of cards to inflict the punishment for overdoing it (technically known to us fatiguetards as “Post exertional malaise”). They might reluctantly get up off their bums to make me feel crap for an hour or so, or a day at most, just to follow prison protocol and tick the boxes, but then they can’t be bothered any more, because there’s an important game of footy on the telly.
I have been doing lots of things with the aim of getting better, like taking piles of supplements and using an allergy vacuum cleaner in the house. But I’ve no idea if anything I’m doing is actually responsible for the improvement, or it’s just the passing of time that has helped. (And my mostly good behavior with extreme pacing).
I’ve been trying and failing to do gut healing diets for a fair while now, as gut health is supposed to be linked to overall health, and I can have relatively easy control over what I eat, compared to what I breathe and what my epigenetic profile is doing. (And I get daily feedback out the other end). But my guts haven’t been great lately, even though my energy is up. So maybe they’re not connected after all.
I just do not know. 

I do know that CFS is very often a non-linear fluctuating thing, where you can have multiple improvements and relapses over a timescale of many years. So I’m trying not to get too ahead of myself, and still just living life day by day. But I do know it’s a lot less miserable at ”B”, than “A”. So i guess I’ll just keep on doing what I’m doing, slowly.... and going for lots more snorkels now coz I can!

Friday, 3 January 2020

2019 Summary

2019 = 3 & 3/4 years of ME/CFS. 

Achievements of the year (compared to the last three years):
- I did not get sicker! While my step count doesn’t really show any consistent upward trend this year, I had a better year on the whole, and gradually got more confident in my new level of ability. My crashes were max 2 days in length, which is a total win, and meant I was a bit braver exploring the edges of my safe zone. 

- I did almost all my own laundry! (Mum helped with the bed sheets). (This is big as our washing machine is downstairs)

- Did almost all my own food shopping, including going to the farmers market to buy delicious carrots. (A win because you just can’t get delicious carrots at the normal shop). 

- Took myself to the library several times, with a handy old lady wheelie cart. (Disability parking permit a big help doing occasional chores in town). 

- Went to lots of doctors and got officially diagnosed with endometriosis. Boo! But not at all surprising. 

- Drove myself to most of my appointments, except where it was too far or parking was too hard. 

- Was a hard core disciplinarian with doing one hour of yoga/mindful body movement almost every day. (Very good for maintaining movement in an aerobically constricted body, and calming the still-too-easily-stressed-out nervous system.) Even went out to a few old lady yoga classes. 

- Grew some things in the garden, like kale and silverbeet (with help from several very lovely, helpful people who did the grunt work)

- Pressure sprayed and oiled the deck. 

- Thought a lot about bushfires, organized a street meeting

- Made 800 paper cranes, and counting, for a friend who is far sicker than I. 

- Went out and hung around with people more. 

- Went to several of the climate change rallies. 

- Managed the share house merry-go-round. Four new housemates this year. All the advertising, interviewing, inducting, adjusting.....

Things I tried to see if it would help me get better:
- Billions of things to try help the endometriosis pain, five months of expensive supplements, special physio stretches, a mindfulness and cbt for endo course, acupuncture, some other Tcm stuff.... (none of this had any noticeable effect). 

- Took clay and charcoal for a couple of weeks two times to try and detox potential mould toxins from my body...

- Finally got over being a tight arse and bought a brand new allergy vacuum cleaner to try and reduce any potential toxic mould spores in my house 

- Took a selection of antiviral herbs I read about that are supposed to work against the Epstein Barr virus.
- Homeopathic anti herpes solution (meh, ‘twas cheap). 

- Continued LDN, which I attribute last year’s improvement to. 

- Continued occasional craniosacral therapy, as its the only alternative therapy I’ve tried that makes me feel something... (still dunno if it actually helps long term, but it’s relaxing at the time)

- Tried wearing an extremely uncomfortable neck brace, as some people in the global me/cfs community have found a structural cause of their fatigue (solution = getting your neck vertebrate fused! Must admit I didn’t pursue this avenue particularly thoroughly). 

- Checked in with old doctors and went to see one new doctor, who reconfirmed low iron and zinc and gut parasites. (Will continue supplementing, tried some antiparasitic herbs, which didn’t do anything noticeable). 

- Collected daily health data, made graphs, did statistics, unsuccessfully tried to figure out patterns. 

- Mostly paleo, high-vegetable, low-grain diet. 

Nicest things of the year:
- Went camping at the beach two times (Fortescue and Maria!) and to the Mt Field gov huts two times.

- Saw the fagus! 

- Went snorkeling in the summer time!

- Had excellent friends who helped me with many things, like going camping, vacuuming, gardening and trail-ridering

- Read lots of books. 

- Hung out in nice places like Strickland falls, the Springs and the Waterworks. Continued to frequency find pleasure in forced slowness. 

- Developed a new habit of going out to look at the stars every night before bed

- Had lots of nice plants in the garden to look at, and ate delicious mandarins, loganberries and stone fruit from the garden. 

Things I think I should’ve done more of, (but hey, napping and recovering from all the other things above took a lot of time too):
- Played music
- Learnt birds
- Arty and writery stuff
- Been better at doing the boring gut healing diet

So, things are alright at this level. 2019 was good. Happy new year/decade humans! 

Friday, 22 November 2019

Six minor, but very stupid annoying things about ME/CFS

The worst things about CFS is how much time we spend feeing sick, miserable and in pain. The worst thing about CFS is the sharp ache of missing our past, healthy, energetic lives, or the imagined healthy lives we never had. The worst thing about CFS is how vulnerable it makes us to abuse, poverty, natural disaster, stress, and anything that disrupts our rigid sleep, rest and feeding schedule. The worst thing about CFS is not being taken seriously by some doctors, and never knowing what caused our mystery illness….

There’s quite a few worst things about CFS that are definitely complaint-worthy, but there’s also lots of little things that feel comparatively petty, but niggle anyway. Sometimes it helps just to have a good old whinge about them! Here’s a few: 

1. Getting fat and stupid diets
Some people can lose dangerous amounts of weight with their version of CFS, but with complete lack of exercise ability, my body tends towards weight gain. I have been watching my diet for the first time in my life, so I haven’t yet become actually obese, but have definitely gained a few kilos of extra pudge. Besides arguably shallow, irrelevant, yet still powerfully present aesthetic concerns, it's just UNCOMFORTABLE. Getting more chub rub (despite zero exercise), having bigger boobs, not fitting into some of my clothes anymore and having more squishy bits getting in the way when I’m trying to do certain twisty moves in yoga is UNCOMFORTABLE! Seeing myself in the mirror can trigger various shame and toxic thought spirals, which I then get annoyed at myself for caring about, as I am being influenced by the unethical and COMPLETELY STUPID beauty industry that aims to keep women constantly miserable, self loathing, and spending money on trying to “fix” themselves. But I know if my incremental weight gain continues, I could become an unhealthy weight with a plethora of brand new, associated, unenjoyable health concerns. And diets are WAY less fun than exercise. In fact, they are most often completely boring and stupid and make me grumpy and I DONT LIKE THEM AT ALL. Ugh. I have developed fairly sustainable healthy eating habits, which involve intermittent fasting for about 16 hours a day, and an 8 hour eating period, plus I eat fairly low carb and mostly paleo food which keeps me satisfied for longer. I eat mostly vegetables, small amounts of wallaby meat, healthy fats like olive oil, and maybe too much dark chocolate and nuts. I ALREADY EAT HEALTHY! I ALREADY RESTRICT MY DIET! However, I still continue to gain weight, so I probably need to do something more. But what? When I tried longer fasts, or the 5:2 diet, I got very cranky and cracked and ate lots of bread and cake. SIGH :( Boring! 

Additionally, I am always meaning to try various gut-healing diets like the auto-immune paleo diet and the GAPS diet, in case they help my general health. But I have been chronically procrastinating about doing these because, like all diets,  they are BORING and HARD and bone broth and organ meats are rather unappealing. Diets take a lot of willpower, which is a limited resource, especially when it comes to delicious dairy products. Ugh. Boo.  (But AT LEAST no doctors yet have assumed that the reason for my health problems is being overweight, rather than the other way around.) 2. Being a party pooper / the fun police  

When I was really sick and intolerant to sounds, I was often needing to ask my housemates to turn their music down, and constantly feeling guilty about being the fun police, which was really wearing. It was really hard and I know it annoyed them too and they’d have preferred not to live with a sick person, even if they were mostly good about it. So I felt sick AND guilty about something I had no control over.  (I have since tried to only invite housemates who prefer the quiet life themselves, so things have improved for now.) 3. Less tolerance for other small things going wrong, and being fearful that small things won’t heal 

CFS is one giant thing that’s wrong with my body, and I spend much of my quota of tolerance and acceptance being okay with that. But if a new thing goes wrong with my body (or in my world), especially if it is ANOTHER unexplained thing, like a random pinched nerve or a weird itchy sore, I’m more likely to be upset and catastrophize that it's never going to get better. I’m not as confident in my body’s healing capacity as before, as that confidence was cracked by getting sick four years ago and not getting better. (Mostly, however, the small things do get better. My papercuts DO heal! Well done body) 4. Stupid health books 
Stupid health books that all say contradictory things. So many of them. Piles of them.  So many quacks, writing books, trying to sell online courses and expensive supplements and $700 skype consults and courses.  And they sometimes say things that I think are pretty stupid and definitely unfun, like try drinking 2 litres of celery juice a day and doing coffee enemas. And even though I think they’re stupid, I feel guilty for not trying them, because it means I haven’t tried everything. Ugh. Stuuuuupid!  5. Sunny days being the worst.  

Perfectly beautiful weather days and happy events like weddings can make me sad. Sad about missing out. (I am getting better at not getting too upset though. My life is ok). 

6. Looking healthy

I guess if it came down to it, I would choose looking healthy over looking rat-shit-sick, but it’s just weird that when I am really seriously disabled, I look perfectly healthy. I feel awkward when using disabled car parks, when meeting people who don’t know my story, or when walking along the footpath slower than an old lady. I feel insecure that people might think I’m a hypochondriac, mentally unwell, lazy or a faker. Instead of explaining myself, I often pretend to be normal for a short period of time, and then pay for it later. Or I make up lies about recovering from an injury. I have a car sticker that says “not all disabilities are visible”. I wish I had a little sign above my head that said that too. A minor thing, but a constant, 

Anyhow, bla bla, thanks for listening to my whinges. Sometimes whinging gives temporary relief. Letting all the frustration out. Ughrghghghghfhhghghughh! CFS IS A STUPID ANNOYING THING!!!! So annoying that I don’t even have any funny illustrations for this post. Maybe I’ll work on them later. 

Thanks all. Time for another nap!  

Wednesday, 9 October 2019

On sitting

I used to be a walker. Walking, striding, hiking, climbing, ambling, meandering, strolling, bush-bashing. The ancient art of propelling oneself forwards with balance, legs, breath and heart. Streets, bush, beach, uphill, down, nearby and remote, off track and on. It was an integral part of being me. For work, joy, health, commute, fun, exploration, stress-relief and a simple bodily necessity. Moving my body, circulating my blood, aerating my lungs. Feeling alive, feeling free, and in touch with the wild nature of my body and the world beneath my feet.

But I can’t do that anymore. An invisible, mysterious, chronic illness landed upon me nearly four years ago, and has curtailed my energy budget to a one-figured percentage of my previous allowance. So now, in its place, I am a sitter. Meditation, you may call it. At least, attempted.

I’m not as good at sitting as I was at walking. I always wanted to walk, was compelled to, was whining and biting at my leash in caged frustration when kept inside for a day. I never had to force myself to go for walks, as I do with my daily sitting, for which I must exercise strict self-discipline.

I’m much better at sitting outside, where I can attempt to balance my attention on the sounds of nature, birds, waves and wind, and the feel of fresh air blowing across my face. But unlike walking, which is an entirely normal thing to do in public, sitting can be weird. It is a private practice, and people often apologize when they pass by for disturbing me. I try to find nooks and crannies out of the way, although it’s sometimes not easy due to my limited mobility. I wear sunglasses and a broad brimmed hat to hide my closed eyes. I am a stealth meditator. I don’t position my hands in any stereotypical meditation mudras, as I’d feel too embarrassed, like a “spiritual wannabe” or mindless follower of those leading the “mindfulness” trend on the internet: toned, white, young, “#blessed” yoga ladies. Sitting outdoors can be cold, so I take plenty of jumpers with me, and my foam sleeping mat. Strangers sometimes ask if I’m going camping, which I think is a funny question, because my bag is just a daypack, and I’m usually somewhere relatively suburban. “No, it’s just for sitting on”, I say. Sitting! How strange that sitting is such a odd thing to do nowadays, at least when it’s not in front of a screen.

Half an hour a day is my rule. I can take forever to get settled, I get terrible pins and needles and I check the timer constantly. But if I go a day without I miss it. My body and mind are more tightly knotted and misaligned. After I sit for a while, with a meditative intention, my shoulders drop and my jaw tension loosens. I pay intermittent attention to my breath - the windy, rhythmic coolness in my nostrils, and my belly and lungs expanding. I feel pleasure in the breeze against closed eyelids and the break from staring at text. It gives a chance for my thoughts to slowly settle, like silt in the water column, and allows a feeling of spaciousness rather than constriction and imprisonment. I can feel a bit more alive, even without the vigor of exercise. Pausing to be properly still in our beautiful world I notice it more deeply and wondrously. I can become enveloped in the sound of the wind in the trees or the waves breaking on the shore, notice the texture of rock under my feet, the patterns of light on water, and the grace of common gulls, wheeling on high air currents. Loneliness can dissipate. I can let go of comparisons, frustrations and sadnesses, even if just for small moments. Sometimes I discover myself in a moment of peace and uplift and I’m inspired and think “I’m going to do this twice a day” or “I’ll sign up for one of those ten day meditation courses!”. But the next moment the discomfort returns, and I think “ten days of sitting, for ten hours a day! Ugh, no thanks!” 


So I’m very imperfect at it, I procrastinate doing it every day, and I am much more likely to be sitting there thinking “I can’t feel my right foot anymore, how long has it been?” than zenned out and receiving insights from my Higher Self. My most ardent personal desire is still to be able to use my body freely again, like I used to. But for now, sitting is my daily link to sanity and peace, and the main practice that helps me cope with life in the invisible  prison. I am grateful for this opportunity to practice. I am grateful that I can currently practice, as for a while I was so sick that I couldn’t sit upright for very long, let alone drive a car to take myself to nearby outdoor places. And I’m grateful for living in this small city, where some accessible, beautiful, semi-wild sit-spots still exist.