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:

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. ( 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