Wednesday, 19 April 2017

In support of a Universal Basic Income

(Or at least a more kind and compassionate social security system)

The idea of a Universal Basic Income (UBI) is an idea that I believe needs a lot more airplay. The concept is that everyone in the country, bar none, gets an automatic social security payment, regardless of age, race, gender, employment, income, or anything. There is no Centrelink.

I've been a fan of the idea, and not a huge fan of the Centrelink Beast, long before I got sick.
I won't explain here the multiple social benefits I believe it could entail, nor will I get into the economic details of how it would work, but I will provide a few thoughts on why a UBI would greatly improve the lives of sick and vulnerable people in our community. (Ps. Regarding economics, let's just assume we tax those people and companies who earn obscene amounts of money a little bit more - not so much that they risk losing their 25th house or anything, just a tiny bit more. I mean, if I can live on $270 a week, I'm sure they could get by a little bit less than several hundred million). 

Firstly, don't get me wrong. I am very grateful to live in a country that at least has some form of social security, for students, job-seekers and the disabled, even if it is flawed. If we did not have this support, myself and many others would be in a lot worse situation than we are now. However, one of my main gripes with the immense, glacially-moving, impersonal bureaucracy that is Centrelink, is that every interaction leaves me with a sense of punctured and deflated self-worth. The sole purpose of all correspondence seems to be to prove you are not a welfare cheat. You are rarely given the benefit of the doubt when it comes to having your payments suddenly suspended. Busy students, parents or very sick people are forced to wait on hours on the phone in desperation to find out why. 

Social security exists due to a belief that everyone is a worthwhile human being, worthy of support. But of course we are all fallible, and susceptible to falling upon hard times, in which we may need financial assistance. Currently, barring the way of somebody gaining this often critically-needed support, are piles of complex paperwork, mandatory meetings for which you have no choice of timing, and telephone waiting times of up 90 minutes, if you can get through at all. 

I managed the Centrelink obstacle course throughout my student-years, with alternating bouts of frustration and acceptance. I often took in text books to read in the office. I thought about a game you could play whilst you waited on hold on the phone - gaining points for doing things like going to the loo, having a shower, changing the oil in your car. I waited 2 months for my claim for a student allowance to be processed in 2015, grateful that I had some savings as a buffer. My house mate, however, has just completed a 2 year nursing degree, involving several 10-week full-time practical placements, without any student assistance from Centrelink, because it was his second degree after an arts degree. He worked his weekends in an aged care home, and barely had a day or evening off in 2 years. I covered his rent and household bills several times while he waited for a pay check.

One time, I witnessed an old lady waiting in the queue at Centrelink collapse in grief for the recent loss of her husband. She was assisted back to her feet by a tattooed young mother with teeth missing.

That's the kind of stress that can make people sick, or at least weaken their immune systems.

It is often beyond what people who are already extraordinarily sick can handle.

Currently I am lucky enough to have a little in my savings account as a buffer, so if it takes me a week or two to sort out why my payments got cut off, I'm not going to lose my home. I also have well-practised frugal living skills. However many others do not have this second safety-net for when the safety-net fails. 

The past year I have been receiving $540/fortnight in Newstart payments, obtaining a medical certificate every three months that exempts me for looking for jobs or working for the dole. 

My symptoms are very similar to those reported by sufferers of Chronic Fatigue Syndrome / Myalgic Encephalomyelitis, an illness which, in the past, many doctors, insurance agencies and social security offices have failed to recognise as real. But I can 100% vouch for its realness. Before I got sick I was working in a highly physical outdoors job as a remote-area track ranger in Tasmania, and I had just finished a high school teaching degree. I am lucky enough to have no history of mental illness. With CFS/ME at my worst, I cannot stand for more than several minutes with out feeling dizzy and sick. My glands and throat are swollen like the flu. I experience heavy brain fog and cannot block out noises or other stimuli, making conversations very hard. I can't drive. I can't cook. I can't shop. I only get out of bed for going to the toilet or going to microwave some food. The tinny, fast-paced repetitive music of the Centrelink hold-line bashes and scrapes against my skull, as I struggle to not fall asleep while I wait. I struggle when going to the doctors to get my 3-monthly medical exemption form – sitting upright in a car make me nauseous, and there's nowhere to lie down in the waiting room either. (Centrelink doesn't accept certificates from the home doctor service).

I'm currently not as bad as that, due to months of careful pacing, but I am certain that any undue stress or exertion would push me back down in the pit, exponentially decreasing my chances of recovery at the same time. Luckily my doctors have never doubted me, as I can't imagine how much further that would erode your sense of self worth. Yet I have to use my precious and limited energy jumping figurative hoops to prove to Centrelink I am not a dole-bludger. 

Currently I'm in a long slow-paced battle with the Beast as I try to defer a mandatory meeting until my mum gets back from holiday. As I can't drive, catch a bus, walk, or stand upright for very long, I need someone to drive me there, stand in line for me, and provide back-up when I say I am too sick to work. The meeting is about a nonsensical letter I received that states my condition has been assessed as 'not temporary'. Therefore the law says I need to sign up for a 'mutual agreement plan' (which is usually about how many many jobs a week you have to search for and/or a work for the dole agreement). 

One positive that CFS is such a mystery disease, is that there are not yet any specialists that I have to fork out money to go and see. $540/fortnight and my savings buffer would get eaten up pretty quickly then! Nevertheless, I live pretty close to the line nowadays. I have been delaying seeing a dentist for an on-again-off-again toothache, partly because transport is hard for me, and partly because I'm scared of the cost. I rely heavily on my mum as my taxi service to doctors appointments, as a real taxi would break my budget. One of the reasons I have delayed applying for the higher-rated Disability Support Pension, is the multiple horror stories I have read about the process on an online CFS support group. However, I intend to start down this road soon. 

The current social security system is not a kind one. It forces ill and elderly people to wait in long queues, both on the phone and in person. It imposes piles of complex paperwork upon those requesting help, and provides very little assistance in filling it out. (I was rejected for my student payments in 2015 because I've made mistakes in the paperwork, and I have a University degree!) It sends out false debt notices, and cancels payments with no reasons given. Unnecessary stress is placed upon the chronically ill, who worry about losing their income, ability to support themselves and home. 

There is also the barriers of pride and stigma that cause long delays in very sick people applying for help. People who were previously healthy, strong and independent, can take a long time to accept they can no longer work, and push themselves into far sicker states that they would have without the financial stress. This is particularly true for CFS/ME which does not yet have a clear diagnostic technique, or wide-spread awareness. Given the connection between stress and health, perhaps there would be less chronic illness in the first place if a UBI took away that pressure from people's lives.

A UBI would stand strongly behind the belief that every human is worthy of care and support. It would not only prevent sick people from going through the wringer, but give all people the space to look after their health and well-being as their first priority. I can only see positive impacts on people's mental health, and also the level of joy, creativity and entrepreneurship in society in general.

So bring on the UBI I say! Sometime in my lifetime at least. (Or if I can't have that, at least a more kind and compassionate social security system).

(This paper contains an article by my friend Millie on her perspective of caring for her partner with CFS and the idea of a UBI). 

Saturday, 15 April 2017

Broken: a new metaphor for CFS management

When I was about 15 I discovered that my bicycle was not only the funnest, fastest toy for mucking about on outside, or just the best way getting to the local newsagent to spend my pocket money on lollies, but also the most efficient methods for gaining independence both from my parents, and the rigid time table of the metro bus. 

I wasn't yet brave enough to ride on the road, so one day I was pootling along the footpath, on my way to Sandy Bay. I'd just reached the part where the road runs right next to the estuary and I was daydreaming, lost in watching the play of light and wind on the water, when my progress was brought to a jarring halt by the sudden appearance of a short, green post.

There was a sharp pain in my right arm and tears sprang in my eyes in the first few moments after the collision. But I didn't think it hurt enough to be broken. I picked up my trusty steed, and kept pedalling, albeit with one arm held rather gingerly, to the after-school sailing course, where I continued to learn about wind, waves and water, sails, keels, tacking and which ropes to pull. 

About a month, and plenty of sailing after the event my wrist was still aching, so my mum took me to get an x-ray, though I still didn't believe it hurt enough to be broken. A small fracture was detected, and my arm was strapped up in a nice fluorescent green plaster for the next 6 weeks. I was allowed to do my grade 10 exams typing with my left hand on a computer, and I got a free pass from having to do the dishes at home. On the whole, I thought the story was quite funny.

Here are some lovely sympathetic letters my friends wrote to me at the time: 

Soon after exams were over, the plaster came off, and I went on a life-changing end of year bush walk with some friends to Pine Valley. This involved 5 days of picking up heavy packs, scaling precipitous  mountains, falling over in the mud, and even a bit of rock climbing. Discovering that I actually liked bush walking, rather than regarding it as a boring hobby of my parents, changed the course of my life.

(Proud of myself after having fallen in a mud-hole up to my right-knee. 1998)

I can't remember how we discovered my arm was broken again after the trip, but it certainly wasn't due to me suspecting so! It was probably a routine check-up. Anyhow, I went back in another plaster (yellow this time), for 6 weeks, and then wore a rigid, but removable plastic support brace for months after that.

I still went bushwalking, plaster cast and all. 

Starting the Overland Track with yellow plaster cast (1998). 

On top of Mount Anne with plastic arm brace (1999)
Another lovely card from a friend. (Portrait of me bush walking with a broken arm and a silly hat and shirt)

Despite this, and much to my mum's relief, the bone eventually healed with the support of the cast, but, due to my recklessness, it took almost a year rather than 6 weeks.

So, what has this got to do with my current chronic fatigue syndrome (CFS), almost 20 years later?

Well, for one, it demonstrates that I might possess somewhat of a stubborn nature: an unwillingness to hold myself back from fun and adventures, just because I might be sick or injured. And secondly, I am currently using broken bones a new metaphor,  to try and manage my chronic fatigue.

When I got sick, just over a year ago, I have read that slow, careful pacing of activity is one of the only proven ways that people have recovered. And so I have been trying to do this all year, and failing.

Here is a very scientific graph that roughly shows the progress of my health over the year. 

The bad news is that I have been getting gradually worse. After each crash I never regain my previous level of functionality. But the good news is, that between crashes, I do get better, albeit at a creepingly slow snails pace. I interpret this as my body's miraculous natural healing powers coming into play, just as they do when you break a bone. (Check it out! So, if I can prevent the crashes, or, i.e. not stand on any snakes in the game of 'snakes and excruciatingly long and slow ladders' I may have a chance of getting better. 

As I wrote about in a previous post, (, pacing by 'feel' was not working for me, due to the most common symptom of CFS, which is PEM (Post Exertional Malaise). This means you don't receive any immediate feedback when you've overdone it. The sneaky, treacherous bugger waits a day or two before it completely knock you for six. 

Knocked for six. Me and my most CFS constant companions over the last year: the floor, an eyebag and a set of noise-isolating headphones. 2017

I thought I had it sorted when I received my new wrist pedometer around christmas time. Finally I could actually know how many steps I was doing each day, and make sure I didn't do too many! But it didn't work. On the second of January I suffered another prolonged crash into the pit of doom, and felt hopeless and despairing about ever gaining some control over this illness. The pedometer, of course, does not measure the type of steps you do – whether they are fast or slow, uphill or downhill, carrying a heavy weight or not. I am still not achieving the activity levels that I was capable of pre-crash, 4 months later. The consequences of over doing it are far from insignificant.

Despairing facebook post, January 2017. Sorry I can't remember which book the quote is from. 

A short while back, via a Facebook support group, I discovered a new technique that people have been experimenting with to manage their CFS. It involves constantly wearing a heart rate monitor, and making sure your heart rate always stays below a certain level. That level is one that is low enough to prevent you from ever using your cellular anaerobic respiration system. Although I don't fully understand the biochemistry behind it, the theory is that the aerobic energy production mechanism in the cells of CFS sufferers is broken (if you remember high-school science, this process occurs in the mitochondria, which are small organelles inside our cells, where glucose and oxygen get together to produce usable energy, and carbon dioxide as a by-product. If we exercise so hard that we use up all the oxygen in our cells, then anaerobic respiration kicks in. This is much less efficient, and produces lactic-acid as a by-product, which is what makes your muscles burn and for you to ramp down the exercise intensity level or stop for a breather pretty soon!). The theory is, that with CFS we reach our anaerobic threshold much more quickly than a healthy person, and that's why we can't do very much, and why a very small amount of over-activity can knock us out for days or weeks. 

The damage to our cellular respiration system was most likely from a virus, or a combination of viruses or other stresses, but as this is a vastly understudied disease, that until very recently has been regarded by many in the medical profession as psychosomatic, nobody really knows. (By the way, there are now many studies that prove CFS is 'real', and about bloody time. For example: 

So this is how I'm now thinking about it: Something in all of my cells is broken, just like the bone was in my arm. But because my symptoms were initially just a weird feeling, and didn't hurt or weren't visible, I have been pushing myself through and making it worse, just as if I had been walking on a broken bone. 

Everybody has a different anaerobic threshold, which require a special test to find out. Depending on how old and how fit you are, a general rule of thumb is that it is between 65 and 95% of 220 minus your age. If I play it safe and aim for 60%, then that is 111 beats per minute. So I am now regarding 111 beats per minute as the plaster cast that I have to wear. 

This involves doing things very, very slowly – much more slowly than I would do intuitively. I have breaks when walking up a flight of just 5 stairs. I don't hang out my laundry all at once, but I have little sit downs in between. I sit down on boulders when walking slowly along the beach. I sit down immediately if my HR goes above 110. I walk up small hills, backwards and slowly, with my focus on the view, not on my destination, having frequent breathing breaks. 

Its been 3 weeks and it seems to be working. I haven't crashed and my head is much clearer. Touch wood. Because I've been this well before, and crashed hard again. But that was before the knowledge of heart rate monitoring.

There is hope also, that if this method works, and if scientists discover a simple way to test for CFS (which they are working on -, then people can heal a lot quicker, by 'plaster casting' themselves early on. 

Maybe. There are still a lot of unknowns.

But now, my hope levels are rising. Which is also a cause for concern. My hope always rises when I start to feel better, which makes it more emotionally draining if I crash again, and possibly more likely that I'll take risks and push myself too hard. Its only been 3 weeks. Many things could change. Unlike a broken bone, I don't have any science to guide me in to how long I should wear this 'plaster cast' for, and what are safe risks to take. You can't X-ray your mitochondria, so I'm guessing all the way. And the consequence of accidentally crossing my boundaries could be months or years more in 'the fatiguey pit of doom'. That's where I have to do more of the 'listening to my body' gizmo, that sounds so easy, but is so bloody difficult. I need to dramatically err on the side of caution, which is hard, when I am so desperate to start my life again, and I am not pinned to my bed by my symptoms. Plus there are other stresses that could knock me back regardless of all my careful pacing, such other viruses or bacterial illnesses. I'm far from the all-clear. But my head is unfoggy enough to write my first blog post for a month, I've been able to drive a very short distance to the beach, I'm back to doing my qigong exercises and best of all, I haven't felt the horrible aching swollen glands flu feeling for three weeks. And just that is wonderful, at least for just now.

(Plus I can still get lost in watching the patterns of light and water in the sky, without the danger of crashing into a pole!)

Here are some more links on this method that may explain it more clearly than I have: