Open Thinkering


Tag: health

Migraines suck

An easy two-word sentence to write, but a whole world of inner experience that makes little sense to anyone who hasn’t experienced one. This is my fifth in two weeks and I don’t know what to do with myself. I don’t want to spend time around other people. My feeling of self-worth craters. The only way I can look at a screen is using Dark Reader and turning the backlight to almost zero.

It will pass, but the cycle which got me to this place will not. The genetic component I can do nothing about, but the other triggers? Maybe.

‘Beast mode’ as permission-seeking behaviour

I realised something about myself over the past week. It’s a character flaw which presents itself as a kind of ‘Type A’ humblebrag.

I’m an adult who doesn’t need to ask permission from anyone to do anything. I don’t have an employer to please, nor do I need to achieve anything more in my life to be deemed ‘successful’.

And yet, I rarely give myself a day off. In fact, it’s worse than that: I ‘beast’ myself physically, mentally, and emotionally to to a point where I struggle. This gives me an excuse to engage in self-medicating behaviours (which are almost certainly less exciting than the ones you’re imagining).

For example, I walk too far and too quickly and do far too much work for a single module. This leads to periods of time when I’m unable to function at my usual level, so I can actually do things for my own enjoyment rather than perpetuate a system I’ve designed for performance rather than pleasure.

Perhaps I should follow Morrissey’s advice to do your best and don’t worry. Easier said than done when the permission slip you’re seeking is from yourself.

All Watched Over by Machines of Loving Grace

They say that as you get older, you get to know yourself better. I think that’s true on several levels: over the last decade in particular I’ve got to know my physical limits and quirks, my emotional temperature in different situations, as well as my spiritual leanings.

Yesterday, I had an opportunity to get to know myself even better by spending six hours in hospital. This, apparently, was unrelated to my previous episode, and followed 45 minutes of literally heart-wrenching pain in the night. If you know the scene from Indiana Jones and the Temple of Doom, the first 15 minutes of that pain felt like the temple priest forcing his hand into the prisoner’s chest and ripping out his heart.

Fun times.

I won’t give a blow-by-blow account, but suffice to say that I was looked after well (as ever) by the NHS with care and attention. The reason I was in for so long was because I had to have two ECGs and two blood tests a certain number of hours apart. This revealed that I had slightly elevated levels of Troponin, a protein released by the heart when it’s damaged. This damage can occur when it’s stressed through exercise, so it’s normal to have some Troponin in the blood, even when you’re otherwise healthy.

I was discharged when the cardiac consultant said he wasn’t too concerned that my Troponin levels were showing 15 when the ‘normal’ scale goes up to 14. I have to go back if I have any problems and I’m allowed to continue my normal exercise regime.

Both yesterday and a couple of weeks ago I found myself having to tell the story of what happened multiple times. As a patient, you’re also kind of expected to remember anything that might be at all relevant, including all of the details of it. My wife works for NHS Digital, so I have a small insight into some of the difficulties of sharing data even within the same hospital, never mind between services.

But it got me thinking.

In the film Her (2013) the main protagonist falls in love with his very human-sounding AI, who acts on his behalf in many different situations. What I’d like is some type of machine learning that works on my behalf with my data, and surfaces potentially-relevant things to healthcare professionals.

With the best will in the world, busy doctors can’t have read every bit of relevant information about every injury and health condition. Nor can they surface data from quite newly-presenting symptoms, for example with heart conditions that may or may not be related to Covid.

I realise this is a very long way off, and that I’ve acted against this by refusing to share my health data with third-party services. But I’d love something to use something that I could actually trust, and provided benefit both to me as a patient and to the healthcare professionals trying to help me. I’m sure people are working on it. I just hope they have patient care instead of $$$ in mind.

Title from Adam Curtis’ excellent documentary series. Image by Deepmind.