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). 

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! https://www.youtube.com/watch?v=-P6LsendHxU) 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, (http://slowtownsouvenirs.blogspot.com.au/2017/02/how-i-am-going-to-get-better.html), 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: http://www.dailymail.co.uk/health/article-3763433/Chronic-fatigue-real-condition-People-debilitating-illness-telltale-signs-blood.html). 

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 - https://www.mecfsnsw.org.au/research/three-new-biomarkers-for-mecfs/), 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: 






Wednesday, 15 March 2017

Not knowing

Here's me, one year ago, with my bushwalking boots off, airing out my stinky feet, and admiring the view from the Acropolis, one of the most spectacular and precipitous mountain summits in Tasmania. Back when I was full of health, my mitochondria worked perfectly, and my glands didn't ache every day.


If you'd told me a year ago I'd be sick for a whole year, I would have been been devastated. 


But if you told me today I'd only be sick for another year, I would be overjoyed. 

Not knowing if this sickness will ever end, is perhaps one of the hardest things. 

There's no end in sight. 

But we all dwell in uncertainty. 

In its blessings and it's curses. 


(The good news is that I haven't had to wear shoes for almost a year! 

And I can still admire the mountains, feel the breeze on my skin and get lost in the evening skyscape. 

This, incidentally, is the view from the back deck of my house last night. )




Don't know what I'd do if I didn't live in Hobart 

Saturday, 18 February 2017

How I am going to get better

I am allergic to exercise! 


It sounds like an excuse a teenager would make to get out of P.E. Class. 


Ah yes, I knew there would be a meme, thanks internet. 





But unfortunately for me, I actually love exercise!


Well, I probably didn't as an early teenager, but by about 15 years of age, I started walking to and from school several days a week. It took me a bit over an hour and a half each way, and unlike our grandparents who all apparently walked to school each day 10 miles through the snow, this was not normal behaviour in 1999!  I did it because I just liked walking. 


I walked for transport and I walked for recreation, I walked because I sometimes missed the bus. I discovered I liked bushwalking around that age too. In the summer holidays between grade 11 and grade 12,  3 mates and I spent 14 days walking over 160km through South West Tasmania. Our parents dropped us off at one end and picked us up of the other. Since then I have spent many days climbing mountains, wading rivers and bogs, boulder hopping along ridge lines and traversing coastlines all over Tasmania, and a few other parts of the world. 

Western Arthurs Eastern 2000

Precipitous Bluff January 2001



I used to feel pretty damn crappy if I didn't get at least an hour of exercise a day. I like using my muscles, I like breathing hard, and stretching and bending and pushing, appreciating the remarkable act of balance with each step. I like getting sweaty and generating endorphins and feeling hungry and good-healthy-tired at the end of the day. It aerates me, cleanses me and makes me feel alive. I've never been the gym or trained seriously for anything, but I love taking myself on journeys through the great, wild outdoors on my bike, in my kayak, or by foot. I even used to walk for my living! 

Off to clean a toilet in the middle of nowhere for the Parks and Wildlife Service

But now, the best way to describe my predicament is that I actually am allergic to exercise. And not just exercise, but exertion of any kind, including mental and emotional effort. 

I don't fully understand the mechanisms of why this has happened, and neither does medical science. I think it is something to do with the mitochondria, (the energy conversion factories in our cells), and maybe the autonomic nervous system that regulates the balance between the rest and digest versus the fight or flight responses. (In fact, a vagus nerve infection is my favourite unproven theory right now: http://me-pedia.org/wiki/Vagus_nerve_infection_hypothesis)

Anyhow, one of the main, diagnostic symptoms of Chronic Fatigue Syndrome is Post Exertional Malaise (PEM), which is a delayed and often severe payback from exertion. It may not hit you until several hours after the activity, or the next day, or possibly even later if the over-activity is accumulated over several days. 


When healthy, the boundaries of my energy expenditure were fairly elastic. I had some idea about how much exertion was too much and too little, but I could push beyond those limits without major payback. At worse, I would be tired the next day, or perhaps have sore muscles for a few days.


Climbing over Mount Gould in the rain hurt! But only for a day...



Now, my limits are very very sensitive, brittle, sharp like glass, and still invisible. Like before, I do have a vague idea about where they are, but its not clear, and if I accidental cross them, (which it is easy to do as my energy envelope is so small), I descend into the 'fatiguey pit of doom'. The flu, wooziness and brain fog symptoms return, and it may take weeks or months to return to where I was before I fell. 


Its kind of like a game of snakes and ladders. Except most of the snakes are treacherously steep and long, and the ladders are all very short and very very slow. Nor do I know the dimensions of the board. And I'm playing blindfolded. 


Still, I'm learning that the main aim of the game is not to stand on any snakes. I need to find the level of activity I can do without experiencing any sickness flare-up the next day. And stick to that, even if its really really boring, or the wheelie bin has blown over and rubbish is strewn down the street. 

Its called pacing. Only when my symptoms have stabilised for a week or so with no flueyness, achey glands, dizziness or brain fog, can I experiment increasing my energy expenditure, very very gently. 


I've known about pacing since almost the beginning of my illness, and I've been trying to pace for that long. Its just that my body is not functioning in the way it has for most of my life up until now, so I've got a lot to learn about its new limitations and sensitivities. Every crash provides new information and data, buts its a hell of a hard way to learn! 

Overdoing it is often the fault of wishful thinking: “maybe I'll get away with it this time”, and often guilt “I can't let the rubbish blow down the street”. Or sometimes just being  really over it and thinking 'fuck it'. 

At the start of the year I made myself a 5 month plan. I was managing about 2500 steps a day at the time. I did some maths and figured out that if I could increase it by 10% every week, I could be up to 10 000, like a functional human in 5 months time! I was pretty stoked about the possibility. Perhaps I could be bushwalking again by next summer! However shortly after that I accidentally 'trod on a snake' again, plummeted into the pit of doom, and its taken me about 7 weeks to get back to roughly where I was then. 


Needless to say, I am now a lot more cautious, determined and hopefully now better informed not to overdo it again!


I do know that under-doing it can be a problem as well. If you get so used to being smashed in the face when you do overdo it, you might just decide not to get out of bed ever again. But, being optimistic to a fault, I have not developed this problem yet. 


Pacing is very very hard. Ideally I could just 'listen to my body', to pick up on subtle signals that tell me when to stop before it's too late. But, maybe I'm just not 'tuned in' enough yet. Or whatever. 


Hence I am employing several pieces of technology to help me in the quest of finding my safe energy envelope. 

These are:



1. A wrist pedometer. 



I've been wearing this since around Christmas time. (Its a cheaper Chinese version of a Fitbit, and is so much easier to wear and keep on than the $3 one I used to clip onto my pants and kept losing or taking off when I was in bed and forgetting to put back on). 'Exercise' isn't really on the agenda just yet, but I can now know how many incidental 'round the house' steps I do a day – to the toilet and back, to get a cup of tea, etc. It also buzzes when I've done 2000 steps (I can't set it any lower), so I can know when I should really slow down and wind up my activity for the day. I can also plan to have a rest every 500 steps, or whatever my needs are the time. Of course it cannot measure other forms of exertion or stress, or whether those steps were uphill or downhill, fast or slow, but it's a start. 

It is supposed to measure heart rate too, but it doesn't really. Some CFSers find that wearing a device that constantly measures heart rate is useful as it can warn you when you are entering the anaerobic threshold, which is a cause of PEM. (http://www.cfidsselfhelp.org/library/pacing-numbers-using-your-heart-rate-to-stay-inside-energy-envelope). I don't have one of these, but I am making sure to have plenty of rests when I walk back to the house from the garden and not push to do it all in one go). 



2. Heart Rate Variability Monitor



I have started measuring my morning Heart Rate Variability. HRV is something to do with the minute variations in time between your heart beats, and the balance between the parasympathetic and the sympathetic nervous system. In general, a higher number indicates that you are more able to handle stress or an increased 'training' load that day. I've been measuring for about 10 days and I'm averaging around 50, which I believe is a fairly low number. (It does feel satisfying to have my vague fluey feelings validated by a real number. I am not not not making this up!!!) The aim is for a slow and gentle increase. However if it rises rapidly, this shows your parasympathetic nervous system is dominant, which means your body really wants to rest. If it drops, it shows the sympathetic nervous system is dominant, and that probably means you're too stressed out. In either case, you should rest! I'm hoping I can use this information to pace myself better and perhaps pick up trends or wobbles on the edge of the the pit of doom before I physically notice them, but it's early days in my data gathering, so I'll wait and see. I'm using a chest strap that pairs with an app. (I tried the an app that claimed to measure it by putting your finger over the phone camera, but it didn't work for me). 




3. Good old fashioned record keeping and graphs. 





I have been keeping daily records of my symptoms and making graphs for a while now. Over time my recording system has got more and more detailed! Two of the major records I keep are “energy rating” and “sickness level”. Its a pretty subjective figure – the energy rating I give myself is based on how far I imagine I would get if I decided to ride my bike up Mount Wellington (which I did for the first time on Christmas 2015). 1/100 is not out of bed, 2/100 is maybe out the door and microwaving myself some food, 3/100 is downstairs to get my bike and maybe to the top of the driveway, perhaps having cooked something simple myslf, 4/100 is half way to the main road and able to talk to my house mates a little bit too, and 5/100 is to the postbox on the main road. I haven't been above 5/100 for a long time, so I can't say beyond that! Although 100/100 would be awesome, its not my aim, I'd be very happy with anywhere over 10! 



Beautiful kununyi / Mt Wellington, right outside my bedroom window


I also monitor my morning temperature, various aspects of my diet and digestion, the supplements I'm taking and other activity. I hope that with a few more months of data, and perhaps even remembering how to do some statistics from science degree, it might be possible to make some meaning out of all these records, and figure my way out of here! 

Its slow, steady, boring and not a magic or miracle cure, but, it is hope :) 



Working up an appetite for christmas dinner, 2015, about 2 months before the EBV poked its head of of its cave again

Tuesday, 31 January 2017

What have I tried?

I'm really sick! Still!

I've been unusually fatigued since March 2016 and really sick (unable to leave the house and sometimes unable to even talk or cook for myself) since September 2016. It sucks. I hope you trust me that this is not an elaborate scheme to get out of having to have a job. I really do want my health and my life back! 

So, what is wrong with me and what can I do?

My first stop was to the doctor. Blood tests indicated that the Epstein Barr virus (glandular fever) was active in my body again. Rest up, eat well and wait were the doctors orders.

No worries. My summer job had just finished, I found someone to replace me for some casual outdoors work I had lined up, and I pulled out of a bushwalking trip I had been planning to the Du Cane Ranges. I had recently finished my diploma of education, but I decided hold off looking for any teaching work until I got better. I had had glandular fever twice before and recovered both times in in about 4 months, with out any complications.

10 months later, I now refer to my illness as chronic fatigue syndrome, as the fatigue and sickness has gotten a lot worse, it has gone on for so long, and many of my symptoms match those of other CFS sufferers on the internet. I suspect something more is wrong with my body than just glandular fever.

This is not an official diagnosis. CFS, however is never a real diagnosis. Its more that medical science cannot yet figure out what is wrong with you, when all other tests have come up negative. Medical science does not yet understand what causes CFS, nor how to cure it or even ease its symptoms. It may not even be a single disease, seeing that 'fatigue' is the only unifying symptom, and try to name an illness that does not have fatigue as a symptom! There are, however, a baffling number of theories. A prominent one is that it is an immune system dysfunction. But is it not known whether it is an over-reaction (your immune system continues to battle a virus that is no longer there), or an under reaction (your immune system is unable to get on top of the virus). It could be the root cause is something else all together, and it probably involves many different systems in the body, including the endocrine, nervous, digestive and circulatory systems, and how they interact. Trying to make sense of the scientific theories often does my head in! 

Many people do make recoveries from CFS, but they claim a variety of different, sometimes weird and wonderful cures. These include various experimental drug and supplement regimes, accepting Jesus into your heart, getting pregnant, moving to the desert to avoid all mould, taking up yoga and adopting a completely raw food diet.

So what are some of the things I have tried over the past 10 months, out of the vast array of potential CFS cures? My decision making has been guided by a fuzzy matrix of plausibility, accessibility and cost, with the limitation that I only have a small amount of energy to actually leave the house and visit health practitioners.

Here is a list, and my evaluations:

(I have not tried to explain the scientific reasons behind some of my experiments, as it has already taken me 2 months to write this blog post through the brain fog, and I can't remember them all. The reason was probably something I read on the internet somewhere along the way!)


Diet

I didn't think my diet wasn't that bad before CFS. I never drank soft drinks, rarely alcohol and never ate national pies or lollies. I'd never had any serious gut issues or allergies, apart from some minor IBS. However I will admit that during my teaching degree in 2015, I did resort to eating a lot of toast, and when I was working in the bush over the summer, I ate a lot of pasta, porridge and lentils. So that was a lot of carbohydrates, and perhaps not the optimal amount of fruit and vegetables. But I'd never thought about my diet before, and I'd previously done 4 track ranger seasons, and never come down with CFS before. Nevertheless, dietary changes have been a big part of my 'try and get well' experiments.

What? Gluten and dairy exclusion
Why? Gluten and dairy are much maligned as evil foods that are supposed to do horrible, inflammatory things to your gut, release toxins and make you sick. 
What are its drawbacks? Restrictive. No easy food like toast. No delicious food like cheese.
Did it help? I dunno.
How much of a chance have I given it? I strictly excluded dairy and gluten for a 3 weeks trial, but I didn't notice any difference when I reintroduced them. I tend to not don't eat much gluten any more, just in case it is bad for me, and I try to avoid unfermented dairy products for the same reason (this conveniently allows me to eat cheese and yoghurt - because, hey I've got to have some pleasures in my life).
Was it worth trying? Yeah I guess so, because it does help a lot of people.

What? High fat, low carbohydrate diet
Why? This diet was recommended by a doctor because it stops crash and burn hunger cycles, which reduces overall stress on your body. The diet is mainly vegetables with a liberal lashing of healthy fats and a small amount of protein. Apparently if you eat few enough carbohydrates, your body can enter a state called 'ketosis', which some people on the Internet say is good for you for various reasons.
What are its drawbacks? No cake and ice cream, and it can be hard to be fussy with your diet when you are really sick and all you can find to eat in the cupboard that's easy is weetbix.
Did it help? Yes it has stopped me being so hungry all the time and I eat far more vegetables now. It's a good idea I reckon, but I still have CFS, despite the mountains of kale and litres of olive oil I've eaten over the past year.
How much of a chance have I given it? A pretty good chance, 80% good for over 6 months I'd say, but I still cheat a bit. I try to keep my carbs below 100g a day and I track it on an app called cronometer.
Was it worth trying? Yes

What? Intermittent fasting
Why? Fasting is also supposed to be good for you. The Internet say, and I watched a program about it on ABC's Catalyst. Plus my inactive life has been leading to weight gain, so I assume that a bit of calorie restriction can't hurt. 
What are its drawbacks? Sometimes fasting is a bit sad and austere, and it can make the dizziness worse when I'm going through a dizzy phase. 
Did it help? Dunno.
How much of a chance have I given it? I skip breakfast and do a 16 hour fast most days.  
Was it worth trying? Yeah. It's free. In fact, not eating saves you money.

What? MCT oil
Why? Whilst on a low carb, high fat diet, this oil is supposed to help stimulate ketosis, which some people on the Internet say is good for you, I can't remember why. 
What are its drawbacks? Expensive. Tasteless.
Did it help? Not that I noticed.
How much of a chance have I given it? 1 tbsp most mornings for the last month or so. 
Is it worth trying? Maybe. 

What? Drinking bone broth soup
Why? Home made chicken soup, it cures all, they say. Healthy minerals and things. 
Did it help? Dunno
What are its drawbacks? It takes time and effort to make, but otherwise its pretty cheap and tasty. 
How much of a chance have I given it? I have bone broth soup every few days, when my mum makes me some! 
Was it worth trying? Yep. 

What? Fermented foods
Why? Fermented foods are supposed to be super good for you. There's a theory that all ill health stems back to the gut and increasing your healthy gut flora is an all round top thing to do.
Did it help? Dunno
What are its drawbacks? None really, unless it turns our you are allergic to fermented foods, which can be a thing apparently.
How much of a chance have I given it? I regularly eat sauerkraut, kombucha and miso, but I used to do that anyway.
Was it worth trying? Yep, fermented foods are tasty and cheap, even if they don't cure you from CFS.

What? Salty water and lemon juice 
Why? To increase my blood pressure because I sometimes experience orthostatic intolerance (wooziness and dizziness when upright).
Did it help? Yeah I think so. 
What are its drawbacks? None
How much of a chance have I given it? I drink 750ml most mornings. 
Is it worth trying? Yep. It's pretty cheap too. 

What? Apple cider vinegar
Why? Its one of those things again, that is supposed to be supremely good for you and fix everything.
Did it help? Dunno.
What are its drawbacks? None really. I quite like it.
How much of a chance have I given it? OMG I have drunk so much ACV over the past 10 months!
Was it worth trying? Yeah, but only if you like it!


Supplements and medicines

What? Antiviral herbal brew from Goulds: Ingredients: Andrograhis, Licorice, Echinacea, Oregano, Poke Root, Long pepper and Guruchi.
Why? “Smash the Epstein Barr virus in the face” (in the naturopaths own words)
Did it help? Not that I noticed
What are its drawbacks? $50 for about a week's worth. Tastes really disgusting. 
How much of a chance have I given it? I took it every day for three weeks. 
Was it worth trying? Maybe. 

What? Eating 1 tablespoon of turmeric a day. 
Why? Turmeric is supposed to be anti- inflammatory and all round good for you. 
Did it help? Not that I have noticed. 
What are its drawbacks? It tastes gross. Except when it's in a curry. 
How much of a chance have I given it? I've slugged down a turmeric drink maybe 80% of the days since I got sick. 
Was it worth trying? Yeah I guess, its not that expensive in powder form. 

What? Intravenous vitamin C and zinc infusion
Why? Vitamin C is supposed to be a strong antiviral agent, especially at high concentrations. A alternative-ish doctor recommended trying it. 
Did it help? Yes the first time I had it I felt noticeably less sick, but the effect only lasted 2 days. The second time I was a lot sicker to begin with, and I didn't notice any effect. 
What are its drawbacks? $200 a pop! Very expensive for an unproven cure, when one is on a Centrelink income! 
How much of a chance have I given it? I tried it twice, perhaps I could have tried it more, but I was put off by the price. 
Was it worth trying? Maybe

What? Liposomal vitamin C
Why? Some people on the Internet say this is a superior way of delivering vitamin C to your cells than normal vitamin C, as good as, and cheaper than intravenous injections. 
Did it help? Dunno. 
What are its drawbacks? More expensive than normal vitamin C. 
How much of a chance have I given it? I've been taking 2000mg most days for 3-4 months. I did an experiment of taking 6g a day, for 10 days, which I didn't notice any effects from.
Was it worth trying? Yeah I guess so. 

What? Lots of Other supplements: Zinc, magnesium, calcium, multivitamins, co enzyme 10, omega 3s, withania, vitamin B complex, potassium, vitamin d, others. (Lots of dollars of others!)
Why?Supporting my body with minerals and nutrients so my immune system can be strong enough to smash the Epstein Barr virus in the face itself.  A doctor recommended some of them, a naturopath others. Some are just supposed to be generally good for you, and some have been recommended by other CFS patients on the Internet.
Did it help? Dunno. 
What are its drawbacks? They cost money, and I kind of don't believe in getting nutrition from bottles. 
How much of a chance have I given it? I take them most days. 
Was it worth trying? I guess so. 

What? Astragalus and siberian ginseng tea
Why? Its what they give you at Goulds Naturopathy when you say you have fatigue. I think it supposed to support the adrenals or something.
Did it help? Dunno. 
What are its drawbacks? Expensive for tea. 
How much of a chance have I given it? I drank a lot of it when I was first sick, but have waned off. I still drink it every now and then, just in case it helps.
Was it worth trying? It tastes pretty nice with chai spices. Can't hurt.

What? Valerian sleep powder
Why? Because I got an attack of insomnia, and a friend delivered me some 
Did it help? Yes, I actually think it does help me go to sleep. I take it when I can't get to sleep after an hour or so, and it hasn't failed me yet. Hooray for sleep! 
What are its drawbacks? Just more pills, more money, more things.
Was it worth trying? Yes, even if was the placebo effect, I slept properly for the first time in a week after taking it and that made my life so much better!

MOVEMENT, MEDITATION AND STRESS RELEASE

One theory about CFS is that your nervous system gets stuck in the fight or flight response due to too much stress, which means your immune system is suppressed. I didn't think I was overly stressed in the couple of months leading up to getting sick, but maybe I was and didn't know it. I did quite a stressful time during my teaching degree in 2015, but that was 3 months before I got sick. Anyway, a lot of people say they improve from CFS when they learn to chill out. 

What? Meditation
Why? Chilling out, down regulating the stress response to allow the immune system to work better. Also a coping strategy, and something that people say is pretty a pretty good life habit in general.
Did it help? Yes, I usually feel like a better human after sitting. I notice tension in my body and release it. My eyes feel better. I feel calmer. It helps me with being in the here and now, which is useful, because thinking about the past makes me jealous of my previous self, and thinking about the future is 1. sometimes pretty difficult with brain fog, and 2. pretty useless when things have become so uncertain.
What are its drawbacks? I get epic pins and needles from sitting cross legged! Sometimes when I feel really sick, I just don't want to meditate and just 'sit with it'. I want to distract myself from it as much as possible! (Audio meditations can be easier when I'm feeling more sick, but some audio meditations are read by very annoying people, and you need to spend time finding ones that you like).
How much of a chance have I given it? I try to sit for 20 minutes to half an hour most days. 
Is it worth trying? Yes. 

What? Yoga
Why? To down regulate the stress response and help you heal through gentle, restorative movement. A lot of people claim yoga as an important part of their recovery. 
Did it help? Well, actually, I used to religiously go to a yoga class once a week for the past decade and loved it. A few months into CFS I just couldn't do it any more as it was too much effort. It was one of the last out of the house activities I was forced to give up. However, I still do some restorative yoga, which is basically lying on the floor in different positions, and is something that I can do at least!
What are its drawbacks? Active yoga takes a fair bit of energy and muscle strength and moving my head up and down all the time can make me feel woozy.
How much of a chance have I given it? I have done a LOT of restorative yoga.
Is it worth trying? Yes, depending what level of sickness you are at.

What? Medical Qigong
Why? Gentle, restorative movement to help with energy flow and healing.
Did it help? Yes, I actually do feel better most times I do it. It takes a lot less muscular energy than yoga, and is far gentler.
What are its drawbacks? I don't do it when I feel super bad as it does take energy.
How much of a chance have I given it? Almost every day, 20-60 minutes. Sometimes I do it in my imagination. I haven't done it for a while, due to relapsing and feeling tired and cranky again.
Is it worth trying? Yes, plus its free to learn on youtube. 

What? Tens machine
Why? I read something about vagus nerve stimulation being a potential treatment on a CFS Internet forum, and how you can achieve that by hooking a TENS machine to your earlobes! I also read that TENS machines can help period pain, which I suffer from pretty epically, so I purchased a cheap $50 machine for the purpose of a dual experiment.
Did it help? Nope, it just felt weird
How much of a chance have I given it? I tired it once on my uterus and once on my earlobes, and didn't notice any difference either time, plus it felt pretty unpleasant on my earlobes!
Is it worth trying? Nope.

What? Chi machine
Why? This is a machine that was lent to me by a friend of a friend. It is a machine that wobbles your legs back and forth while you lie on the floor. I think it is supposed to stimulate lymph flow and stuff. 
Did it help? Maybe. I haven't really noticed, but its not an unpleasant thing to do.
What are its drawbacks? Expensive if someone doesn't loan you one. 
How much of a chance have I given it? I use it most days when I'm pretty low and unable to go for a walk.
Is it worth trying? If you can get a free one. 


What? Annie Hopper's Dynamic Neural Retraining Method
Why? A friend of a friend lent me the DVD package, as she said it helped her with her CFS. Is is a protocol developed by an American lady, Annie Hopper who claims to have cured herself of multiple chemical sensitivities. The process is supposed to work for CFS as well. The theory is that the disorder is in the limbic system, which is part of your brain, and that you can cure yourself through doing neuroplasticity exercises that 'rewire your brain'.
Did it help? Hmm. No. Well, after watching the DVD series and doing the exercises for a little bit, I still have CFS, although I didn't actually do 1 hour a day for 6 months, like I was supposed to. However, I do think its an interesting and valid theory that the disorder lies in the autonomic nervous system. I think the exercises could probably help you cope with having CFS, especially if you are an American and don't mind positive thinking guff,  but pretty implausible that they could actually cure you.
What are its drawbacks? I found Annie really annoying and too full of positive thinking guff, so the DVDs often made me feel cranky. The content is 75% testimonials: “I went to Annie's course and was cured in 3 days”, 20% positive thinking guff, and probably less than 5% actual content. I think it borders on pretty dangerous territory, that if you don't believe enough, you won't get better, even though I think believing that you can get better is important. Or that if you don't love yourself enough, you won't get better, even though loving and being gentle with yourself is important. This ignores the fact that CFS is a real disease that deserves far more funding and attention than it has received for medical research.
How much of a chance have I given it? Well, admittedly not one hour a day for 6 months, but I did try saying the words and doing the actions to myself for a little while, and sometimes I still do say some of the words to myself when things get really bad, and it can help me let go a bit of stress about feeling really sick.
Is it worth trying? I think parts of the 'system' would help you cope with having CFS, but I'm pretty sceptical about it curing you, despite of and because because of all the testimonials sounding 'too good to be true'. It depends on your personality.

What? Being true to my authentic self
Why? Many, many CFS self help books and 'how I healed myself from CFS' videos on youtube say that this is the answer
Did it help? No! This idea makes me very very cranky and shitty!
What are its drawbacks? Totally ignores this is a physiological not a psychological illness, no matter how much those two might be interlinked. Makes me very grumpy (see above).
How much if a chance have I given it? Well, actually, I've been trying that one out my whole life, and of course I'm not always doing it perfectly, but hey, I'm not perfect! We don't live in a perfect world! Life is always nuanced and we need to make compromises and work with what we've got. I'm sure I've still got a whole lot of lessons and good and humbling to learn about being a human, but I have never ever ever tried to be anyone other than myself.
Is it worth trying? No comment. 


OTHER TREATMENTS 

What? Cranio sacral therapy
Why? I read somewhere it might help. I don't really understand the theory behind it, but I do often feel weird in the area where my head meets my neck, and wonder if that is where the problem or inflammation may be.
Did it help? It definitely made me feel something. I was usually wiped out afterwards, but hopefully in a good way. The practitioner was also a good counsellor and that helped me talk about what I was doing through.
What are its drawbacks? It costs money and you have to drive there. 
How much of a chance have I given it? 4-5 treatments a few months ago when I could still drive. 
Is it worth trying? Yes. 

What? Acupuncture / Traditional Chinese Medicine
Why? Support the body to get better on its own, through meridians and acupuncture points and other things that the Chinese have been doing for thousands of years.
Did it help? I didn't notice any effect. 
What are its drawbacks? $80 a session, need to drive there. 
How much of a chance have I given it? Only two sessions with a nice practitioner, but I didn't notice any improvement, and by this stage driving to the other side of town was a pretty stressful activity for me. I also visited another lady earlier on, who was recommended by a couple of people. She administered acupuncture and some hands-on body work, then prescribed some restorative yoga poses (which I still do). She then told me that my body had told her somebody was angry at me, and perhaps I would like to sort that out. This statement was right at the end of the appointment with no chance to ask her what she meant, and left me feeling half worried about what I might have inadvertently done to someone, and half totally incredulous about her treatment method and skills, which I had temporarily suspended my scepticism to receive. Over time those proportions have changed to mostly incredulous and annoyed, rather than worried about having made someone angry (NB. If this is you, I am sorry, but you need to take responsibility for your own feelings and tell me so we can talk about it, voodoo is so last century!)
Is it worth trying? Maybe. 

What? Sauna
Why? I thought maybe I could cook the Epstein Barr Virus to death or at least help my body 'detox' or something. Plus, our house happens to have a sauna downstairs, so it was worth a shot.
Did it help? Nope
What are its drawbacks? I find saunas an intense physical experience at the best of times, not least when I am feeling sick and fragile. 
How much of a chance have I given it? I tried a few times, it wiped me out. 
Is it worth trying? Maybe.

What? Hot baths with magnesium salts
Why? Supposed to relax you and maybe something else to do with the magnesium. Detoxing or something? I can't remember. Its just another one of those things supposed to be good for you.
Did it help? Yeah, baths are something you can occupy your time with when you have CFS, and at least you can't do anything else while you're in them so they force you to relax! I'm still not better though!
What are its drawbacks? None. Oh, wet hair I guess, which is one of the reasons I shaved my head.
How much of a chance have I given it? I've had quite a lot of baths. 
Is it worth trying? Yep. 

What? Detoxing my life
Why? You know, chemicals and pesticides and things. Bad for you.
Did it help? I've been a hippy for a long time now and I still got CFS! I haven't used shampoo or stinky soaps, and only very rarely deodorant (sorry mum) for over a decade. The only products I use are a bit of eco tea-tree laundry powder (so eco its brown!), eco-bulk dishwashing detergent, hippy soap, hippy toothpaste and hippy sunscreen very occasionally. I drink out of a stainless steel water bottle, eat a good proportion of organic food and I live in a small city at the bottom of the world with plenty of fresh mountain and ocean air. Um, so NO. It didn't help! 
What are its drawbacks? Well, sometimes 'chemicals' are difficult to avoid.
How much of a chance have I given it? See above. 10-12 years of being a hippy. BUT, I do still drink tap water! Maybe that's my problem.
Is it worth trying. Well, yeah, most of that stuff is bullshit anyway, and washing it down the drain really sucks for the fishies in the ocean. 


What? Pacing
Why? This is probably, really my only hope, as it has the best scientific evidence behind it. It involves finding out what level of activity I experience no symptoms at (sickness or wooziness), and staying strictly within that envelope. I can then experiment with increasing it by infinitesimal amounts (under 5%), with the hope that I can one day increase it back to pre-sickness levels, if I avoid overdoing it and crashing back in the pit. Key parts of pacing are procrastination (don't do today what I can do tomorrow!), only finishing half a job, and pre-emptive rest, even if I don't feel tired at the time. 
Did it help? I think its my only hope really. I have been intending to 'pace' the whole time I have been sick, but as my body is no longer functioning like it used to my entire life up until now, it is very difficult to know where my invisible limits are. It is very easy to cross them when I am either having a good time with friends, or there's something that really needs to be done (e.g. cleaning up broken glass, collecting the wheelie bin and all the rubbish that blew down the street in a wind storm). Only for the last month have I been wearing a quality pedometer on my wrist that can actually track how many steps I do a day, which is really hard to know otherwise, so hopefully I can gain a bit more data on where the boundaries of my envelope are.
What are its drawbacks? Its boring, lonely, frustrating and non-intuitive. Its requires vast amounts of patience. I need to rely more on mathematics than feel, as it very difficult to know the point when I have done too much. I don't get the feedback until later, or the next day, when I get Post Exertional Malaise (a common symptom of CFS). Accidentally over-doing it without knowing it at the time can cause a crash that will take months to recover from. Although I am now wearing my pedometer to track the steps I do (currently about 1300 without getting worse), I cannot track things like socialisation, using my brain, whether those steps are uphill or flat, stress, or heavy lifting.
Is it worth trying: Yes I think its really my only hope. Its just going to take a very long time, and probably a few more crashes along the way as I learn where my limits are, especially as my limits will change over time. 

What will I try next? 

There are still plenty of things to try from the plethora of CFS cures on the Internet! What might I try this year?

  • Get a test for Lyme disease, just to make sure that isn't a cofactor in my illness. 
  • Go back to the doctor just to make sure there aren't any other diagnosable diseases we should test for (going to the doctor is a big energetic cost for me, and from my reading, I don't think there is anything else, but just in case...)
  • Ask the doctor about any other treatments he has heard of, then go away and research them myself before committing to anything.
  • Ask the doctor if there could be a link with endometriosis, and whether I should get tested for this (the diagnostic procedure involves day surgery, which I'm totally not up for yet).
  • Grow and juice wheat grass. Why not, its cheap and can't hurt.
  • Go back to the cranio-sacral therapist once I have enough energy to organise appointments and transport (too complicated at the moment).
  • Continue with supplements, medical qigong, meditation and the other things that might help, or at least don't make me cranky.
  • Probiotics (even though I don't think I have bad guts)
  • Other supplements I could try but need to research more are: Alpha Lipoid Acid, Lysine, Taurine, Vitamin E, mushroom extracts, NADH, D-Ribose. (I need to plan a controlled experiment to see if they actually make any difference or I'm just wasting money).
  • Extreme and disciplined pacing, using my pedometer!
I'll also keep reading and researching!

(Oh, and the thought of a completely raw food diet makes my stomach clench in protest; I'm sure that Jesus was a great fella but I do have doubts about his ability to step up and banish the EBV from my cells or resurrect my immune system right now; central Australia is a very long way from my friends and parents, so who would bring me chicken soup if I moved to the desert? (plus my house isn't mouldy); and while getting pregnant and ending up with a helpless newborn baby as well as my helpless sick self to look after sounds like a fabulous idea, its just that being a bed bound grumpy sick person who can't string a coherent sentence together whilst sitting upright doesn't do much for my romantic prospects right now. Thanks for the suggestions though internet! Xxx J)