Saturday, 10 June 2017

Balance and bandaids

“Hello, I'm here to see the heart specialist, and....ah I feel a bit dizzy....ah, umm.....I'll just squat down here for a bit”.

Walking in to the reception desk from the drop-off zone outside the hospital had been a bit much for me.

As the receptionist hurried to offer me a glass of water and a seat, I tried to explain that squatting on the floor was actually a lot better for me than sitting on a seat. It's true. My heart rate monitor shows at least ten beats per minute less when squatting as compared to sitting. Fortunately, the doctor appeared, and let me into the examination room early, where I could lie down. He carried my bag and helped me take off my shoes. He was a nice doctor. 


After recovering, and recounting my history and symptoms, I stood up again, and the doctor measured the changes in my heart rate and blood pressure. The former rose, and the latter fell, even though I did not move. We continued to chat, until at five minutes, my body hit the wall, as it had done when I reached the reception desk. “Ah, I'm starting to feel a bit uncomfortable now”, I said abruptly interrupting the conversation.

I lay down again, but from the five minutes of data, in which my heart rate had reached 110 beats per minute, the doctor could diagnose me with a pretty clear case of Orthostatic Intolerance, or what I usually call my "being-upright problem”. It is a common symptom of chronic fatigue syndrome, and possibly the most disabling. The diagnosis of OI is useful, as it is a recognised condition on its own, and this may help my case with centrelink. It is also treatable.

I left with a prescription for a drug, a hormone that will increase the amount of salt retained by my kidneys, and therefore increase my blood volume and hopefully allow me to stand upright for longer without my heart racing, my stress-response kicking in, and me feeling sick, anxious and woozy. The doctor was very optimistic it would help, and also that I would probably get better from CFS.

I left feeling scared, hopeful and knowing I needed to brace for disappointment all at the same time.

I'm scared of the drug, and the long list of unlikely, but possible side-effects. There's no doubt that even if it helped just a little bit, it would greatly improve my quality of life. But the stubborn hippy in me really wants to eat clean, pace and meditate myself better instead. I want to get better from the core, the root cause of this disease, not just take a drug that ameliorates the symptoms. In theory I'm totally against the pharmaceutical band-aid solutions that our world is biased towards. I'm scared of masking my symptoms, and making the underlying problem worse by messing around with weird drugs and synthetic hormones, especially when no one really knows what is wrong with my body in the first place.

But in reality it's been over 14 months of gradually getting worse despite all my best efforts of the above, and I am also scared of how much worse it could get. Underneath the mountains of deep-green organic kale that's passed through my digestive tract, and the hours of self-healing visualisation audio-meditations I've listened to on youtube (hey I've gotta fill my long, brain-fogged horizontal hours somehow), and in the complete absence of gluten, dairy, sugar and fun from my life, I'm still not winning. So I decided it was time to take a slice of humble pie and seek more advice from modern medicine. 

I am aware how remarkable modern medicine is and how many lives it saves. I'm aware of its patchy track record and the many tragic mistakes it has made along the way. I'm aware of the placebo effect. I'm aware of the nocebo effect. I'm aware of the exhaustion and despair of many cfs patients who have spent too much precious energy, money and hope on visiting specialists and trying treatments that help only a tiny bit, for a short time, or not at all, or that have ultimately been harmful. I'm aware that sometimes, some treatments do work well for a small subset of patients, even if they do nothing for the majority. And I'm also aware of the incredible utility of band-aids, both in preventing further physical damage and in preventing pain and psychological stress, which are harmful in themselves. I would not decline painkillers in the interim between developing a toothache and seeing the dentist. In fact I would love the absolute shit out of those painkillers. 

I am going to try the drugs. 

After the appointment, the flame of hope which was fanned by the optimism of the doctor, battled with the rationality of knowing I also needed to brace for disappointment. I want my life back, but I've been on the hope - disappointment roller-coaster for too long now. However the fantasies of getting better still bubbled up. In fact, they bubbled up and grew so much, that they hit a place where I suddenly became scared of getting better. If I get better, I'll have to start work again, and what will i do with my life? I probably couldn't be a track ranger, a bushwalking guide or a teacher any more, as those professions take far too much energy. My world has become so small over the past year, and my days so simple (sleeping in, reading, crocheting, preparing food, recovering from eating), that the prospect of living a big, busy life again seems hugely daunting. Then my rational brain kicked in, and told me to stop being stupid.

"If, and only if, you do get a bit better, what will you do Jen?"

"Well, let me think...... I might do my own laundry. I might not lie on the floor in the doctors waiting room. I might talk to my friends have fun and laugh more. I might go to the shops and buy my own food. I might go to the beach. I might even go swimming or ride my bike again one day, or....and...and....and... "

Of course the idea of working is overwhelming from the perspective of someone who can't stand even up for five minutes.

One day at time Jen, one day at a time.

For now, I continue the arduous task of finding the right balance between hope and disappointment, humility and stubborn belief, and between trusting and being appropriately sceptical of those who have far more medical knowledge than I, yet operate in a world that does not yet understand the root cause of CFS/ME.




Monday, 5 June 2017

I'm still here

This is a short post to document that I'm still here. Still alive, still breathing. Just not quite winning yet. Here's a graph of my number of steps per day in 2017.



This is numerical proof from my wrist-band pedometer that my fatigue and other symptoms got worse around the end of April, for no clear reason that I've deduced. So I've been stuck horizontal a lot more, and the only exercise I've been achieving is imaginary qi gong (imaginary yoga is still a bit hard, and I can't even imagine having the energy to do imaginary star-jumps). I also haven't had the mental power and clarity to convert my thoughts, feelings and scrawled notes into something I feel okay about publishing on the internet. To be honest, one of the main reasons I write this blog is because I am very socially isolated by this disease, and I want to call out to the world that "I am still here!". Any 'raising of awareness' about CFS that I can achieve is really a side-benefit. But I also don't want this blog to be just more boring ramblings of a sick, desperate, lonely person. There's enough of that online already.

Even though I haven't really written or drawn anything I deem worth publishing, I still have a lot to say. Ideas swirl around in my head. Themes around the topic of being physically, mentally and socially straight-jacketed, by a completely unexpected and disabling illness in my early 30s. One that, despite my best efforts at pacing, doesn't appear to be going anywhere soon.

Hopefully one day soon I'll be able to write something again. It's on my to do list every day, along with 'get out of bed', 'have lunch', 'wash up' and 'rest rest rest rest rest'. I have more than a dozen story ideas.

In the meantime, here are two cartoons that demonstrates the rapid variability of this illness. How people with ME/CFS can occasionally look and act okay, and then can completely and rapidly wilt into an puddle of swollen, aching glands and brain fog on the floor, usually when the person we are talking to has left, and we no longer feel the need to hold ourselves together.


(Source unknown, sorry)


I don't know how to copy and paste those little moving gif pictures, but here is a link the second one (just scroll down the page a bit).



And, here is my interpretation of the above experience, which comes from the fact that one of the most frustrating things about having such craphouse batteries, is not that I can't do my favourite happy-making things, like go bodysurfing, climb mountains or hang out with friends, its that I can't clean. Its sooooo frustrating. And imaginary cleaning just doesn't quite cut the mustard.



If only I could visit my past self, standing at the sink, grumpily banging around pots and pans, and say "Young Jen, you can stand up long enough to do the dishes. You have so much to be grateful for!"

Oh well. 

Next time Gadget, next time. 



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