Robert Heaton

Software Engineer /
One-track lover / Down a two-way lane

Something that I don't talk about much

20 Mar 2015

0. Introduction

2 years ago, I wrote a post called “How chronic pain has made me happier”. It was a silly title.

9 years ago, when I was 17, I did the London to Brighton cycle ride, a 54 mile charity event ridden by 27,000 people. I came in 3rd in a time of 2.5 hours. I wasn’t allowed to bring my bike on the train back to London, so I turned around and cycled the 54 miles back home. This would probably have been OK, but I had spent the preceding 6 months cycling many, many hundreds of miles a week, regardless of how I felt. Rest days and protein supplements were for the weak and sexually frustrated. My muscles felt tired almost all the time, but I was able to keep spinning my legs and moving my bike along pretty rapidly so this didn’t seem to matter. I just kept cycling.

After this ride, my nervous system decided that it had had enough. It decided that from now on my body was going to hurt a lot, all the time. Finally I had no choice but to stop. At least, this is my best guess for what happened. No one has ever worked out what is actually wrong with me.

I’ve seen more specialists than I have Adam Sandler movies (I’ll talk about this). I’ve spent years dealing with the pain in multiple equally terrible ways (I’ll talk about this). I believe I’ve learned and changed a lot about how I relate to myself and other people, and what the point is (I’ll talk about this). And over the last year, I think I’ve actually started to get better (I don’t really know how or why, but I’ll talk about this too).

We’ll start with the obvious.

1. That Does Not Sound Like A Good Idea, Why Would You Do That

I really like exercising. But so do lots of other people, and they don’t force their nervous system to lock itself in a Panic Room and refuse to come out.

It’s hard to talk about why this happened without using some backhandedly-self-congratulatory variation on “I am just too hardcore/awesome/badass.” I wanted to completely annihilate the London To Brighton ride, and wasn’t going to let anything get in my way. I was too focussed on achieving my goals and was too single-minded to remember to take care of myself. I was willing to push through the pain to get to where I wanted to be, and I wanted to be at the very top. Et cetera.

I wanted to do well in London To Brighton, but if it hadn’t been that it would have been something else. Fundamentally I think I just wanted to eat a lot of food and watch a lot of TV without feeling bad. I like cycling because you can go on epic adventures entirely under your own steam. You can then come home, pass out on the couch with a sandwich the size of a small dog, and watch The Simpsons until you care more about Bart than you do about your own brother (whatsisname).

The pernicious implication is that if you do not go cycling then you cannot eat a big sandwich and you may not watch The Simpsons. You have not earned it, you should be out there making something of yourself. And in my terribly-written book, the halo of activity only lasts until you next go to sleep. The next day you start again from zero and have to re-earn your relaxation rights anew. This is not a healthy mindset. I think I’m getting a bit better.

2. Treatment

The day after The Ride my legs hurt, which was not surprising. But then they just kept on hurting. At first I assumed that the pain was continuously on the verge of going away, and wasn’t tremendously concerned. I started university in October 2006, and joined the college rowing and football clubs so that I was prepared for when I could start training properly in a month or two.

6 months later, with still no improvement, I started to get a little worried, and was referred to a sports injury specialist in Oxford. She sent me to a further specialist in London, and I was launched into a poorly-designed pinball machine of speculative diagnoses and drugs. It took a grad-school’s-worth of doctors and a long, long time to realise and accept that no one really knew what was wrong with me, and that probably no one ever would. The first doctor to say outright that medicine probably wasn’t going to be able to help very much was an eminent neurologist and total, total prick who seemed to rather enjoy doing so. At least by this point I knew I didn’t have ME, fibromyalgia, Lyme’s disease, most forms of Motor Neurone disease or any discernible nerve damage. I also knew that Gabapentin, Pregabalin, several types of steroids, and Vitamin B12 injections were not going to be of much use.

The doctors I saw were no doubt very smart, knew a lot about the body, and apart from Dr. Neurologist Dickhead were all very pleasant people. But they didn’t seem to pay much, if any attention to the way that the brain impacts pain, or how distressing it is to be placing all your hopes on a new doctor and a new tentative diagnosis and treatment every other week, all the while being in pain every second of every day. It’s not like trying to work out why your car is making that irritating rattling noise. Every cycle of promise, hope and failure is pretty much devastating. That said, I’m not entirely sure what they personally could do differently. All they can really do is run their discipline’s tests, ask you about your feelings, and then suggest someone else when the results come back negative.

I remember not wanting to admit to anyone that I might be feeling a bit sad, because then I would probably have to go and see a pain management specialist, and there was no way I was going to think about managing anything. You don’t manage things that are going to be gone soon, and the pain was going to be gone soon, because the alternative, specifically, that it might not be gone soon, was really quite scary. Furthermore, I was a staunchly unaffected stoic psychic ninja badass, I just needed to be told which pills to take and which stretches to do and then I would do them with monk-like focus and then I would be OK again. So yes, I suppose that it’s kind of annoying that my body hurts all the time, but I’m a busy guy, I don’t really think about it and just get on with my life, you know.

A big part of my self-image was (and is) that I don’t do things by half-measures. I go big or I go home (motherfucker). This is a bit true, but not that true. I actually go somewhat sizeable or wander in the general direction of my house (motherfucker). But that’s not as fun an image. So I decided I wasn’t interested in doing any exercise at all until I was totally better, because that would constitute a half-measure, and as already explained, I deal exclusively in full-measures (motherfucker). This was partly what I actually felt, but mostly just consistent with my schtick. It turns out that this is a super-duper-bad idea, and that when chronic pain is involved you want to be roughly quarter-measuring everything. Trying to keep up with how you used to be is going to end terribly, but stopping your active life dead in its tracks is just as bad. However, it was a long time before I started letting anybody treat me like someone who might need to start thinking about pain in the long-long-term. Just shut up and run your tests and tell me what I need to do to get better.

An “Integrated Pain Management” clinic in Shropshire set me on a path-less-stupid. I had an appointment with a neurologist, a physiotherapist and a psychologist (all at the same time), who cheerfully agreed that they had no idea what was actually wrong with me, but that this wasn’t a big problem. They said I should have Cognitive Behavioural Therapy and start a Graded Exercise Programme; I’d almost certainly improve, even if I didn’t get totally better anytime soon or indeed ever. I wasn’t thrilled but I was very tired, so I did as I was told.

CBT went a long way towards disabusing me of some of my more foolish notions. I came out agreeing that there was no need to wait until I was totally better before starting to gently exercise, that all the signs pointed towards my body not actually being damaged, that my nervous system was just going mad for some reason, and that none of this was any reason to catastrophise (a very important word). I started moving again (although because I am an idiot this came with its own problems - see below), and started to feel a bit less hopeless.

I remember booking catch-up sessions 6 and 12 months after I finished the initial course, because this seemed like a sensible thing to do. I expected to be able to move onto more advanced techniques or learn some new finesses for the ones I already knew. But my therapist was very open in saying that he didn’t really know what I was expecting him to do. I described how I felt like I was doing all the things we had talked about, that I wasn’t feeling “better” but I think I felt somewhat improved, and he said cool, nice one, keep it up.

It turns out that therapy isn’t like working on your golf swing. You can always spend an hour with a good golf coach, and they’ll notice that your back foot is coming up too early or you’re holding the wrong end of the club. They can tell you what you’re doing wrong, you can try to not do it quite so wrong, and next time they can tell you if you’re getting any better. But in therapy, the feedback loop is much less obvious. Beyond obvious signs of depression or broken thought processes, it’s very hard to work out what’s going on inside someone’s head, and even harder to help them effect subtle, incremental and lasting improvements. Your golf swing is external, possessed of an objective level of quality, and isn’t being influenced by every conversation you have or setback you experience. Your beliefs about what it means when your legs hurt are rather more complicated.

It can be disconcerting to realise that there’s only so far that reading and listening can get you and the rest is dictated by whatever’s going on inside your head.

3. Alternatives

I tried a whole load of other mainstream and not-so-mainstream treatments (see appendix for a full list). For the most part I’ve now stopped looking for new tricks, and suspect that sensible exercise, self-medicated psychology and just getting on with life are the way forward for me now. Whilst I wouldn’t suggest homeopathy or reiki to anyone, I do think that when mainstream medicine is mystified it’s worth trying out alternatives that are intuitively plausible, haven’t been actually disproven, and aren’t too expensive in money, time or effort. Tai Chi and the Feldenkrais Method aren’t scientifically proven to work (for a given value of work), but it’s not inconceivable that there might be something good inside, and they’re relaxing, cheap and kind of fun. They’re not certain or science, but are still a good bet. On the other hand, anything that sets you back a few weeks’ salary, requires travelling to the other side of the country, or seems intrinsically mad is not.

Throughout 2014 I would religiously spin my bike around the block in a low gear for 5km every morning. It felt like it got my joints oiled and my muscles stretched, and during this period I did overall see significant improvement. I think that this was almost certainly for reasons unrelated and that this ritual was basically just superstition, but I like cycling and I like rituals, so I don’t think I care. If I’d been rubbing my body with an expensive, pungent and highly acidic lotion 8 times a day then that would be different.

I read a lot of books and websites about pain between years 3-7. Many of them are ludicrously sensible and informative - see appendix. I wish I’d read them sooner.

I read many general self-help books too - see appendix again. I don’t know exactly what I think about the genre as a whole. I certainly remember feeling fantastic, hopeful, optimistic whilst reading them. But once you’ve finished making your notes on the final, wide-eyed page and rejoin the real world, it doesn’t take long to realise that taking concrete, consistent action towards your goals (or whatever) is much more tiring than reading about it, and much much more tiring than doing things the same way you’ve always done them. At the very least they’re a picturesque distraction, and I’d probably roll my eyes at anyone who tried to claim that they were symptomatic of the narcissistic self-centred nature of modern Western blah blah blah.

It does turn out that the best self-help books are the ones that sneakily disguise themselves as literary masterpieces.

4. My relationship with exercise

I really, really love being active. I got myself into this mess by cycling and cycling and cycling until my brain and body collaboratively decided that they had to make me stop before I killed myself. At the time it happened, a big chunk of my identity was tied up in how much of a long-distance-hardcore-badass I was. Losing this was essentially soulcrushing. If I wanted to be hyperbolic I would say that the road back to fitness is like the path to getting my soul back.

CBT convinced me that refusing to exercise at all until I was totally better was somewhere between unwise and life-ruining. I began gently moving.

However, when you are walking along a path that has your soul at the other end, it’s impossible not to break into a jog sometimes. I’ve got in shape 4 times in the last 5 years, and each time eventually exploded in a cloud of over-exertion and stress and ended up right back where I started. Several months later, having traded all my progress for a few vague and unlearned lessons, I would grit my teeth and start again with yet another 1 minute run, 30 second walk, 1 minute run.

I want to write “It’s nowhere near as simple as just saying ‘here’s an exercise program where you increase your distances and weights at an incredibly sensible and medically approved rate’ and then just doing that”, but in some ways it is. The solution to the problem of “I’m in pain because I keep doing too much exercise” is very, very clearly “Jesus Christ, just do less exercise.” I know I’m not alone in finding this bizarrely difficult though.

It’s hard to get carried away when I can only do 100m of swimming before I have to stop. I’m not thinking of myself as an athlete or comparing myself to my friends because if I was I would have given up immediately. But when I’m swimming 1.6km and increasing by 30m each week, and holding my own in the fast lane of the local pool, I start to wonder why I don’t just bump that up to 60m and start overtaking that guy in the red hat. Of course, he isn’t working on what is still meant to be a recovery program from an ongoing, long-term and poorly-understood condition, but I’m almost going as fast as him so… I start to think in terms of the reasons why a normalperson might exercise (burn calories, get buff, get buffer than the other guy, run the big race in the summer). This is cool and understandable and kind of the whole point of trying to get better, but requires great care that I’ve never had until very recently.

The last year has been the first time I’ve diversified my exercise portfolio. I used to choose one out of cycling, swimming or running, and do that every other day until suddenly I couldn’t anymore. Now I do each activity once a week. This means spreading effort between muscle groups (I assume this is good?), and only one opportunity to increase distance per week. Increasing by 1 length of swimming, 200m of running and 1km of cycling per week is much better than increasing by 3 lengths of swimming. It becomes harder to accidentally-on-purpose sabotage myself.

I keep a detailed spreadsheet of what I do everyday, how I feel physically (on a scale of 1-4), how much stress I’m experiencing, how well I’ve been sleeping, whether I’ve been stretching/meditating/etc. This makes it easier to see how small increases add up to become large ones, meaning more satisfaction and less compulsion to do too much and nuke myself. It also quantifies and visualises trends in how I’m doing overall. I used to spend several days in the red zone every month. I haven’t had any since June 2014.

I still essentially view my career path as running 5km, then 5.2km, then 5.4km, then…and eventually I’ll be better. I suspect that this isn’t entirely constructive, and that as far as my pain is concerned there’s no great benefit from going beyond a certain level of baseline conditioning. I don’t know what will actually make me completely better and normal again, and it’s entirely possible and indeed likely that nothing ever will. Probably the pain will fade asymptotically into the background, but won’t ever go below a certain level of physical presence. I have absolutely no idea what it might feel like to wake up one day and not be in pain anymore. I have even less idea what I would actually do if that ever happened. I’ll probably start by calling up my parents and crying.

4. Other people and self-image

I am less envious of other people and their mobility and agility than I used to be. Prosaically this might just be because I am now pretty mobile myself, but I like to think there’s some level of increased inner peace and maturity mixed in there too. When people talk about how much iron they just pumped or how many mountains they just climbed, I don’t feel sick and I’m not literally willing them to die. I feel like a physical being again. I eat protein bars. I own running shoes.

Every day, in every way, I look slightly better naked.

I feel more like a realboy. My body image (this is probably not the right term) has changed. I’ve never felt fat, but I used to feel like some kind of immobile, ponderous giant. I felt very bottom-heavy, although I’m not quite sure what I mean by this. I felt like I stuck out. I couldn’t really articulate why.

I am not invalid. My achievements are not invalid. They aren’t wiped out or rendered moot by the fact that my body hurts. These are obvious but very new ideas.

I used to have some very contradictory self-images. Everything I did was essentially pointless until my body stopped hurting, and yet I did a craptonne of stuff anyway because that was what I did. I would list all the things I’ve achieved during the last 9 years, but some of them are kind of cool and I don’t want it to look like I’m boasting.

It makes me nervous when I read words to the effect of “a key component of happiness is health.” I don’t want to have to believe that my life would be orders of magnitude better if my bike had been stolen when I was 17. I don’t have references, but I’m pretty sure I’ve read books by Bertrand Russell and the Dalai Lama that include words to this effect. I tend to just close my mind and skip to the next paragraph.

There are millions of entirely bed-ridden people with strictly worse conditions than mine, and several bajillion with different but proveably much, much harder lives than mine. But it’s not a competition. To probably completely misunderstand Jack Kerouac, “Have no fear or shame in the dignity of yr experience, language & knowledge.” It would be ignorant to melodramaticise the extent of my troubles, but unnecessarily self-deprecating to dismiss them as trivial.

5. Interpreting pain

I’ve started getting my head around the fact that my pain does not mean that my body is damaged. My warning system has just gone nuts. I am fine. My pain is not scary beyond itself, and when I feel good, this is the reality. My pain is a wrapper around the real state of my body and health, and when this falls away all that’s left is this truth.

I’ve learned some staggeringly obvious causalities. Pain makes it harder to be happy at the best of times, and heightened pain can sometimes make it essentially impossible. When in the midst of a flare-up, I feel down, and typically end up post-rationalising that I’m feeling this way because I’m going out too much or not enough or doing the wrong things or with the wrong people or at the wrong times or… But when the pain subsides I suddenly stop worrying that I need more hobbies, and I remember that actually I’m doing kind of alright. I still feel sad when the pain gets bad, I’m just a bit better at knowing what this does and doesn’t imply. I think I have my spreadsheet and writing hundreds of thousands of words in my diary to thank for this.

I’ve learned the hard way to be cautious about publicly declaring that some particular treatment is helping or I have secured some kind of permanent improvement. Reversion to the mean is a powerful force, and it’s good business sense to reflexively caveat everything.

def with_caveat(caveat_type)
   caveat_string = case caveat_type
   when :new_treatment
      "Of course, it’s way to early to tell"
   when :apparent_improvement
      "Of course, this could just be variance"
   # …etc…
      raise ArgumentError, "Unknown caveat_type #{caveat_type}"
   puts caveat_string
   puts caveat_string

with_caveat(:new_treatment) do
   puts "I think Tai Chi is really helping"

6. Stress and other modulators

Stress is a huge modulator of physical pain. This is one of the seemingly-small number of things that medical science is able to say about pain, and so I’ve always known this to be true. But it’s far, far bigger than I ever realised before. In general I live a fairly stress-free existence. I write software to solve fun problems during the day, and do anything except this in the evenings and on weekends. Occasionally a problem that might not be that fun needs solving more quickly or effectively than I feel able to, or I have a disagreement with someone I kind of like about whether or not I am a total dick. These situations can very quickly make my head go cloudy and my legs go wobbly, but these effects are very quickly reversed when things are sorted out.

Sleeping well can be another big modulator. So can alcohol, although I am finding both much less significant than they used to be. I still generally go to bed on time, and only usually drink on dates and other occasions where it would be too weird not to. I’m much more nervous about how I’ll feel when I wake up the next day than about who will be on the other side of the bed.


7. Talking about it

Oddly, given that I’ve published several thousand words on the subject of my chronic pain, I rarely talk about it. A very, very small minority of people that I know have any idea about any of this.

Even when I do talk about it, it can be hard to communicate just what a massive deal I believe it is and what an enormous and at times all-consuming part of my life it is. Unless I go into details and specifics, many people’s understandable reaction is along the lines of “oh yeah, I pulled my hamstring last year too, it was really annoying.” I don’t want to claim that my thing is more of a big deal than yours, but it very probably is.

Although not always.

Writing a lot has been nice. Evernote doesn’t have a “total words written” function, but I would guess that my diary for the last 4 years is at around a quarter of a million. It’s instructive to be able to look back at where I’ve come from; there are some truly miserable entries if you know where to look. For understandable but possibly unconstructive reasons, I prefer not to spend much time talking about pain-related problems as I experience them. I don’t mind talking about how bad things used to be, or about all the smart things I’ve done to make them better.

With this in mind, in the summer of 2009 I was revising for my finals at university, and at the time they felt very important and caused me a lot of stress. The pain was so bad that I didn’t really sleep for 2 months. I occasionally slept for a few hours around 5am, and instead spent most nights crying and watching cartoons. After a hilarious series of events, I spent an afternoon in hospital being told that I had testicular cancer but that I shouldn’t worry because they would chop it all out within the next day or two. It turned out that I did not have cancer. A week before my first exam I totally lost it, phoned up my parents and told them I was getting the bus home and I would see them around 2am. The doctors at home gave me sleeping pills, steroids and a Paul McKenna relaxation CD. I went back the day before my first exam, and spent the next week giving what turned out to be a very credible account of orbital angular momentum quantum numbers.

8. Chronic pain has not made me happier

In the first post I wrote about my pain, I claimed that Chronic Pain Has Made Me Happier. I didn’t really believe this then, and certainly don’t believe it now. But I do believe a couple of appropriately caveatted versions of the statement.

“Chronic pain appears to have had some positive effects on my life, although it’s unclear whether or not these would have happened anyway.” “If my chronic pain literally vanished tomorrow, I might conceivably believe that it was overall a roughly neutral experience.” “Chronic pain has caused me to focus on many pursuits and hobbies that I enjoy and might not have focussed on otherwise.”

But none of these are quite as snappy.

To be concrete, I have meditated most days for years, and I don’t believe I would have done this otherwise. I wouldn’t have taken up Tai Chi. I wouldn’t have played quite so much poker. I wouldn’t have put so much effort into trying to tame my insane need to be constantly “constructive”.

To be wooly, I am probably calmer that I would have been otherwise, I am probably slightly more understanding of other people’s crap, and I assume I have more mental fortitude, whatever that means.

9. Comfort Zone

Your comfort zone is the space of activities that feel familiar and that you can do with minimal anxiety. Everybody has one. Between years 1-3 I let mine shrink to roughly the size of my bedroom and a few other places where I could wear baggy tracksuits. I’ve gradually re-expanded it, but this has required a lot of not-always-enjoyable effort. I typically like not drinking too much and going to bed on time. Many twenty-something activities involve lots of drinking and very deliberately not going to bed on time. I’ve heard Going Out described as “very rarely fun, but the price you have to pay to be normal.” That sounds about right to me.

When I feel bad, I can feel really really bad, and so any activity that lasts a long time with a high cost of bailing halfway through is to be approached with trepidation. I tend to do a lot of stuff on my own. This doesn’t mean there aren’t a bunch of people around, but it does mean I tend not to have much social obligation to them to stay. On the other hand, Going Out with a small group of people who are expecting a Big Night is probably my precise, if very mild, idea of hell.

I used to use pain as an excuse for not doing things, both consciously and sub-consciously. This is understandable, but not very helpful. It would be the reason why I would say no to every invitation that didn’t involve an evening of Mario Kart, and the reason why you couldn’t judge me for it. My apartment and my parents’ house are the safest places in the world, and the outside world is a scary place where you can’t always lie down and stretch whenever and however you want. Feeling good is better than feeling terrible is better than the mental effort of change (The Last Psychiatrist).

I’m much better now though.

10. Misc

Some sentences that didn’t fit anywhere else but that I couldn’t bring myself to cut:

Hope and faith can be finite resources.

I feel much better wearing shorts than trousers.

I used to feel noticeably worse when I was sitting in a car.

I sometimes feel anomalously bad when out in strange places, and then immediately much better when I get home and into bed.

I don’t like the words “pain” or “suffering”, and still wince slightly whenever they come up.

I like saying that I am “injured”, because injury implies recovery in a way that “I have unexplained chronic pain” does not. I talk about “getting better”, not “getting cured”. You don’t get cured of injuries.

It must have been very hard for my parents when I’ve clearly been feeling terrible but haven’t wanted to talk about it. They’ve been incredibly supportive and understanding and I love them.

The Appendix

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