Category Archives: General

April 2023 MECFS Update, minddump, family update

Apparently I’m moderate to severe. I’m 90%+ bedbound at the moment, triggered by migraines as we entered spring. Before that was just housebound.

Graph showing resting heart rate. Massive spike recently

Finally, managed to get GP appointment — ended up crying on phone to receptionist. They put me on 10-20 mg amitriptyline to try to prevent the migraines. The above is what that did. Considering 5bpm above my baseline generally indicates I’m suffering extreme exhaustion & severe cognitive symptoms, that spike concerned me. Stopped taking after 7 days, 3 days later it finally started falling. Not at norm yet, but did get my first migraine again, so that’s not so good, though that might have been partially due to the PEM from the GP visit;

GP called me in for an ECG due to that spike, telling me ‘come in or go to A&E’ — so went there. ECG was clear, though they want a 24-hour monitor to check the amitriptyline hasn’t done any damage. I have one coming up in 10 days, which will also be used to diagnose me for POTS — heart spikes when standing / sitting up.

Currently, it seems I have heart rate spikes when standing for any significant time, which makes cooking difficult to impossible :(.

I’m going to be going to hospital with the non-emergency transport service, hopefully they’re bringing a wheelchair for me, which will reduce the PEM (payback) from walking around the hospital.

I tried to dictate some of this post using my iPhone’s speech to text functions, but it seems that it doesn’t handle paragraphs in Gutenberg basically at all — the blocks written that way were ‘corrupted’ and pushing the ‘recover’ button just deleted all the text. Dictating is much easier than typing on my phone, but typing on my laptop keyboard is much easier than dictating.

I’m getting married! In the middle of July, in the registrars’ office in the library, with very close family only. Been thinking about hiring a wheelchair to help me get around, but they’re bloody expensive, and I’m in £3000 of debt. Hopefully be able to tackle that, but it is tough, I’ve not been able to do any side work, and I’m mostly just keeping on top of my day job with a lot of effort. New employer is awesome, and they’ve been so supportive it’s wonderful. Old employer let me keep my laptop, which is what I’m typing this on, and what I’ve been working on, which is wonderful, it’s helped keep me sane.

The ME clinic has discharged me because “there’s nothing more we can do for you”, but on my final session they did a ADHD assessment — it was positive for possible ADHD, so that may explain why I struggle to ‘rest’ effectively. Very hard to turn my brain off, so if you have suggestions for ways to relax when bed bound that don’t involve watching tv/films etc, I’d appreciate them!

That’s pretty much it for this mind dump/life update, hopefully I will have some useful information once the 24-hour heart monitor is complete. Might have POTS, might not.

Staying cool in a heatwave

I’ve been reading lots over the last little while, on how to stay cool in the current heatwave. This is all the recommendations I have. I’ll follow this up with explanations of each suggestion in another post later — writing this has taken a lot out of me! Links are for example, buy what’s available and fits your needs 🙂

The UK is not set up for heat waves of up to 40c, thousands of people will die, we may have power and water outages.

Things to do immediately

Things to do the day before the heatwave

  • Turn your fridge and freezer up — make them colder
  • Freeze bottles of water (Separately from the immediate water stock!). Old fizzy drink bottles are fine. Squeeze them a little before putting the lid on, to give the water space to expand into
    • For one of the bottles, fill it halfway up, and store in the freezer so you can get to it. When you want a cold drink, just fill it a bit, and shake. Instant cold water!
  • If you have south-facing windows, prepare to cover them. A sheet, tin foil, paper.
  • Prepare foods ready to eat cold. Tuna mayo, egg mayo for sandwiches, salads, cold meats, cook some beans ready. Consider cooking a pasta bake or similar and putting it entirely into the fridge
  • At night, open your windows:
    • If you have a multiple level house, open windows/doors on one side of your house on the bottom floor, and on the top open the windows on the other side — so air will flow in a diagonal
    • If you’re in a flat or bungalow, open the windows/doors on opposite side of the house
  • Try to stay at home, or indoors. If your office has air con, I’m jealous. Avoid heavy activity during the day
  • Cover any south facing window with tin foil / paper / baking paper / cardboard / sheets. Do this on the outside if at all possible. If you do it on the inside, you might overheat your windows, and break them. Expensive bills later!

During the heatwave

peeling warning sign

DO NOTs

Do not do any of these things. They will harm you!

  • Drink Alcohol
  • Drink too much coffee (A little to prevent withdrawal is a good idea, but give energy drinks a miss)
  • Use “Air Conditioners” that don’t have an extract hose, that you have to fill with water. They use up the indoor air ability to absorb water — and sweating is the main way you lose heat when it’s too hot, so they make you hotter and make fans work less effectively. It’s safe to use them with a window open
  • Use air conditioners with an extract hose out a window without sealing your window with these kits. Yes they’re ugly, but without them you’re literally pulling hot air in from outside!
  • Heavy exercise — including manual work — especially during the peak in the afternoon, 1200 – 2000 (12pm to 8pm)
  • Avoid cooking using the oven, or hobs whilst windows are closed. If you have to, use the microwave
  • Avoid travelling if possible. Trains will be very slow, aircon may fail. Roads may melt
Green node of traffic light

DOs

  • An hour after sunrise, or as close as possible, close your windows
    • During the heatwave, check the temperature sensor against the weather app, or your weather station. When the indoor temperature is close to the outdoor temperature, go outside a second to see if it feels cooler outside (in the shade!) than inside. If so, open the windows as recommended above — in a diagonal, or opposite side of your dwelling
  • Drink lots of water. One or two electrolyte drinks a day in the absolute peak temperature
  • If indoor temp is below outdoor temp, keep the windows closed. Make sure to open them when it’s warmer
  • Consider pointing a fan out the window once it’s time to open the windows. Use a tissue or light cloth to work out which way the natural wind is blowing air, and point the fan in the direction to work with the wind, not against it
  • Wear light, airy clothes. If you can, stick to 100% cotton, which will wick your sweat and help it evaporate, keeping you cooler
  • Wear a hat if you go outside, and remember your sunscreen — even if it’s cloudy
  • If you have cats, put out a few bowls of water, spread around the building for them to drink from
  • If you have plants, water them before the temperature peak
  • Shower with a lukewarm shower. You want the water just a little cool to the touch. Too cold, and you’ll confuse your body, too hot, and you’ll just make it worse
  • Freeze a hot water bottle. Wrap it in a towel to cool down
  • Wrap an ice pack in a towel, and hold it between your upper thighs. You have arteries there, so will cool your entire body rapidly
  • Damp a towel and put it around your neck
  • Put your feet in a bucket or large bowl of water
  • Don’t use your fans feature to have it change direction it blows air into — oscillation. You want to set up a breeze of air around your room, that’ll effectively multiply how much air is moving without needing too many fans
  • Put a bowl of ice in front of a fan
  • Damp a sheet, or wet duvet cover before sleeping
  • You can set up a fan to blow *into* a duvet cover, effectively inflating it with a constant supply of fresh air. You can use clothes pegs attach it to the fan’s grills

Comment your own tips below!

ARGH! A Rant about software developers

When software developers update their software to include new configuration options, they have a bunch of options to pick from, of how to handle installs running on the old options.

For example, you could

  1.  automatically update config
  2.  document a process to gracefully update config
  3.  Give human readable errors showing what changes you need to make to conifg
  4.  Break the application with a super cryptic error message, and refuse to start until config is wiped with ‘new’ default config.

Why do developers keep picking 4? At least 2 horribly complex bits of software in the past year have decided to do that to me, which cost me a few days of head-bashing-against-desk trying to work out what was broken time. 🙁

Office music

isolation with headphones

or Togetherness by synchronised streaming?

​

Apps used: 

  • Logitech media server (aka squeezebox) – running on a  Raspberry Pi
  • Squeezer (Android) for remote control, queuing tracks, playlist management and synchronising the players
  • SB player (Android) to play the 

    Ps, it’s way past my bedtime! Insomnia is a pain. Goodnight all. 

    Gaming life

    You know, I have tonns of games in my steam library, a bunch on Uplay, Origin I’ve never completed. Yet recently, all I’ve been playing has been a modded minecraft (oh man, did I ever get my money’s worth out of that £10 back in the day), Overwatch and Warframe. Ok well, one of out three being “recent” is better than nothing.

    Minecraft, can’t play vanilla anymore. I yearn for a decent jetpack, computer item storage, nuclear reactor, mining lasers, builders wands. Just can’t go back. So much useful stuff. Been playing Agrarian skies II, which is good, just.. did the modpack creator not ever nerf so many useful tools.

    Overwatch. Oh overwatch. I mainly play support, mercy healer. When you do well, no-one notices. When you do badly, you get shouted at. Much like life, really 😉  Mainly play competitive, just so I have a better chance to not die because my team runs away and leaves me to die. Just in the last day built a new tactic, telling me team when I’ve a resurrect ready! If they all go in and die on a spot, pushing past the enemy, I can just fly right in and pop, they’re all back up. It’s worked wonders to get us on some heavily contested points.

    Warframe. The grind. So much grind. Undending grind. With some really stupid game modes as a garnish on the side. There’s an three-dimensional, in space mode, called Archwing. Most players seem to avoid these modes because are they ever janky. I really wish I’d been recording my last mission. It was to find, disable, and then protect a ship. After dying over, and over, because the ship has (almost) impervious shields, it managed to bug itself into an asteroid. On the downside, it made shooting it really hard. On the upside, the thing sat still enough we could just pump damage in till it finally died. Bigger upside, we had to defend the thing for 3 minutes. Honestly, could’ve just flown away and ignored it, nothing would’ve been able to kill it in that time.

    It’s free to play, so the grind is kinda expected. I just wish it had a better tutorial. On first starting the game, you’re thrust into a story led set of quests that ‘unlock’ stuff in your ship. It’s.. honestly boring as all hell. Tutorials are normally bad, but to be locked into one that’s just plain dull.. I stopped playing for 6 months till friends managed to drag me back in.

    Don’t get me wrong, it’s fun, just can be downright dumb from time to time. The developers are constantly patching more stuff in, but don’t seem to be really helping with the grind. They’re also leaving old weapons and tools to rot, effectively, leaving them behind with other, better weapons.

    “Someone who dies leaves their work behind and that does not entirely die. It never entirely dies as long as humanity exists. The work of each individual contributes to a totality and forms a tapestry that will exist forever” –Isaac Asimov, Robots and Empire

    On the nature of IT exhaustion (a ramble)

    On the nature of sysadmin / ops crunch, exhaustion, and other things like learning programming languages and music.

    Work projects have recently started to basically enter a crunch mode, whereby we’ve a tight deadline to complete. I’ve found, some days, I’m ending up being completely exhausted, to my surprise. Mainly I’ve been sitting in a chair and typed all day, working out problems in systems or configuration, nothing too taxing, and certainly not detailed programming, others are working on that.

    Still, after 8 hours I find my mind slows, and everything is harder. Getting up and moving around buys a little time, as does caffeine, but I wonder, does anyone else working in IT get this sometimes? Especially when their project seems to require stretching of your mental capacity? Please do provide your thoughts below

    Back when I coded for a living, I found when learning new programming language that I’d have to have silence around me, otherwise I couldn’t concentrate. All other times (dealing with support tickets, helping clients, or just actually programming), I need music. Which is a bit weird. I need background noise, else I find it uncomfortable to work.

    20131222-235946.jpgWorked for a few days in central London last week, which was nice, we got a lot done, and working with one of my colleagues there is great. But whilst working, I noticed not needing music. The street sounds outside were pretty constant low-level, plus the noise of the office upstairs. I’m guessing my normally huge music consumption is related to needing background noise to tune out?

    I’m irate, and I can do nothing. Here follows Swearing.

    Re, Syria, refugees, crisis, fuckwits, and general shittyness. Minddump. Rant. Sweaing. Unfiltered.

    Local facebook group currently discussing why Syrians aren’t forming guerrilla bands and trying to take back their country. Especially all fighting-age men. They seem to think that a country with rapidly being-bombed-to-shit infrastructure can even support guerrilla-style civil-war fightback. They think Assad and his goons would welcome civilians arming up and trying to fight for one of the factions. Isn’t that what started this shitstorm in the first bloody place?

    I’m looking on, where at last count 12 fucking countries, including my own, is interfering there, bombing various factions they don’t like, providing weapons to who they do, because apparently no-one learned from what happened with Afghanistan? It’s a religious nightmare over there, and there is no good answers, but berating people running from the absolute mess for not “stopping and fighting” is about as much use as telling a fish it must swim in air.

    ARGH. These people are idiots! Do they think weapons grow on trees! Do they think civilians, people like me, would be able to trust one of these factions enough to throw in with them? Do they think, under their “Men should stay and fight!!!!!” rule, that the men maybe want to get their family out of danger?

    I don’t know any solution. I don’t know how I can help, bar trying to support those fleeing, so they don’t die of starvation or drowning whilst trying to simply survive. I don’t know what I can do. I’m supposed to just say “Oh, no, the people who sound/look/think a little differently from me, they’re bad, they should go away!”? Fuck that.

    … I should probably stay off my local facebook group.

    Hame Run

    I’ve recently got into playing Monster Hunter 4 Ultimate on the 3ds, and this term comes up from the community from time to time. It’s a little cryptic to ‘grok’, unless you’re deep in the community, so here’s a quick post explaining it.

    Put most simply, it’s a quest/monster hunt run done as fast (and insanely) as possible. As my good friend Visi explained:

    “It’s basically where you take in heavy bowguns and stunlock the mob”

    So, bowguns being a weapon you can deploy, and stunlock, force the monster to be constantly stunned; locked into stun.

    And that’s it. If you want to know what ‘hame’ means, read on…

    ‘Hame’, also known as はめ in japanese, is the vulgar term for having sex, or in other words fucking. So, in Monster hunter terms, a hame run is a run in which you fuck the monster over.