Category Archives: life

April 2023 MECFS Update, minddump, family update

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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

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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!

Recipes

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In a fit of desperation, I tweeted asking for *simple*, *easy*, cheap recipes. This is what I got in return. I’m totally posting this so it’s really easy to print them.

And season to taste 😉 Salt & pepper of course, but you can add any herbs you like to it as well.
I must admit, I don’t know what Orzo is..
sunset photo, taken 20th april 2007 in Wales, UK.

Depression & Suicide

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I wrote this as a response to an image post trying to guilt-trip people into not commiting suicide using friends and family, on reddit. The reddit OP removed his post due to criticism, so I’ve copied it here.

Here’s the thing most people don’t get about suicide.

Those who choose to kill themselves aren’t (normally) irrational. They’re making a considered option. They’re aware of the pain they’ll leave. They’re aware of the pain of the method.

Someone who chooses to commit suicide is exactly the same response as the person who chooses to jump to death from a burning building. It’s not that the suicide is a good option. It’s that staying is unbearable.

Severe depression, or severe recurrent depression the type I suffer from, is a cruel, evil disease. It eats at your joy of life, it eats at your ability to look after yourself, it eats at your ability to function day-to-day, even simple things like cooking a meal being more akin to climbing mount Everest in a wheelchair, blindfolded, with your hands tied behind your back, than anything else.

You want to help someone like me not decide in the darkest, most painful times not to die?

First, don’t try to guilt-trip them with friends and family. It won’t help, I already know all those things. I’ve already considered them. I’ve discounted them. Sometimes the suffering is just too great.

Second, be there. That friend who you’ve not heard from for a while? Phone. Suggest popping over for a cuppa tea. Suggest they come to you. Push a little. Text. Email. IM. Skype. Reach out.

Third, if you know someone is suffering, offer to listen, anytime, anywhere, anyhow, and mean it. Keep your phone on next to you, and pick it up at 3am if they call.

Forth, if someone is really bad, struggling day to day, offer real help. Not “I’m here for you” but “hey, I’m coming over Friday, we’ll watch a film and order pizza”. Or “Hey, I’m bringing over my pasta bake, and leaving it with you, I’ll pick up the dish tomorrow.”. “Hey, need any help with housework? I’m free Saturday to come help if you want?”

Finally, Accept that, even then, sometimes someone like me will be suffering too much, and it’s not about you. It’s not about your pain, that they were suffering too much, and decided enough was enough. They’re in less pain than they were before.

P.S. Vote. Vote for people who give a shit about mental health support (in the UK, NOT THE CONSERVATIVES FOR THE LOVE OF ALL THAT IS GOOD). Vote for those who care about basic medical support. Consider donating to research.

p.p.s edit; please don’t say anything along the lines of ‘why don’t you just decide to be happy?’. That doesn’t help.

But seriously, be there for your friends and family, especially if they’re being weirdly distant. You may just save a life.

Office music

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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. 

    Childhood home

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    My mother is selling the house I grew up in 🙁

    A few years ago, my father left the flat I spent a lot of my teens in.

    It’s interesting, even though I moved out from home more than 10 years ago, I still feel a connection to both places. The flat’s probably knocked down by now, and doesn’t even exist, and I’ve spent so little back at mums recently I’m surprised by changes every time I visit.

    I don’t know what’s making me so nostalgic for my youth, looking back into my past? Strange.

    Greebo (cat) looking out into the garden.

    First Night Effect, a ramble from a while ago

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    A very small study was recently released, and covered prominently, which says chiefly;

    “Even when you look at young and healthy people without chronic sleep problems, 99 percent of the time they show this first-night effect [sleeping in a new place] —this weird half-awake, half-asleep state,” says Yuka Sasaki from Brown University.

    http://www.theatlantic.com/science/archive/2016/04/why-we-sleep-badly-on-our-first-night-in-a-new-place/479091/

    Interestingly, I think I’ve experienced this personally. I’ve bounced around a bit, moved, but my primary example was actually a night on which it was not my first sleeping somewhere.

    I’ve had a few house/flatmates over the years, as has any young adult in the UK. Sharing is basically required for all but the richest, thanks to our current housing crisis. In this case, it was a flat in West Ealing, London, quite a nice one really. We had a good landlord, who basically advertised two rooms separately, and arranging meetings to create a flatshare.

    This flatshare was sold to me as a young lady,  let’s call her Shakespeare, visited periodically by her boyfriend, who’ll we’ll call Casper.. We got on OK, in the brief time we knew each other, and for the first 6 months of our lease, everything was fine. Well, mostly fine; Casper was around almost always, and he broke my xbox, but eh. So, I signed another lease with Shakespeare; 12 months this time.

    This was a mistake.

    Casper and I argued, about some weird odd thing. I was going to have someone sleep on the floor for a few days, just coming into the country, and needed somewhere to crash whilst they got on their feet. This apparently was beyond the pail. Suffice to say, words were had, shouting happened, and I no-longer felt safe there.

    The first night was the worst. I basically setup noise traps next to my (lockless) bedroom door, and slept fitfully, waking at the tinyest noise. I was scared of being attacked by Casper, he was bigger and stronger than me. The following days were unpleasant in the extreme. I spent as much time as possible outside the flat, eating at a Wimpys, spending massive quantities of time in the Office, basically hiding from my flatmates. In the end, I decided to forfeit the lease, and left, moving back in with my parents. I ended up continuing to pay for my part of the lease for another 3 months, an action that combined with the commuting now involved to get to work cost me along the lines of £3,000.

    But those few days, before I decided to forfeit, were some of the worst nights I’ve ever had. I can totally believe First Night Sleep is a thing. I just think it may well not be just about your First Night somewhere.

    Epilogue,

    It turned out, that Casper shouldn’t have been staying in the flat with Shakespeare. Landlord was unhappy about that. Also, they got a dog, whom I had been told was gained with Landlord’s tactic approval via a don’t ask, don’t tell basis.

    During the explanation to the (nice) landlord, I might have let slip about the dog. The tactic approval turned out to be a lie, amongst other things, Landlord was Not Happy, especially due to Shakespeare and Casper’s actions after I left. I was actually offered the room again, with a new flatmate. I refused.

    That is also why I eventually moved out of London at the first opportunity. I had a limited-length houseshare in London with a friend, but just couldn’t bring myself to share with someone random again. Work needed people in a new site, so I requested a transfer, somewhere where I could afford (just about) my own place. I’ve been happily away from London (apart from hotels and day visits) ever since.

    I wonder if writing this is interesting to anyone? Also, I do wonder how narcissistic it is for me to publish it publicly. Maybe for another blogpost, another day.

    Link

    Interesting article about how people handle resilience in the New Yorker. Curious to see how research filters into the mainstream. Sounds a little like CBT , though, focusing on how a person perceives and handles thoughts.

    Werner also discovered that resilience could change over time. Some resilient children were especially unlucky: they experienced multiple strong stressors at vulnerable points and their resilience evaporated. Resilience, she explained, is like a constant calculation: Which side of the equation weighs more, the resilience or the stressors? The stressors can become so intense that resilience is overwhelmed. Most people, in short, have a breaking point. On the flip side, some people who weren’t resilient when they were little somehow learned the skills of resilience. They were able to overcome adversity later in life and went on to flourish as much as those who’d been resilient the whole way through. This, of course, raises the question of how resilience might be learned.

    http://www.newyorker.com/science/maria-konnikova/the-secret-formula-for-resilience

    Cloudy Sky

    I lost my faith and it sucks

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    What follows is partially a mind-dump of thoughts and feelings relating to this, partially me telling my (religious) family that I’ve lost my faith, and partly needing to say these things somewhere. There’s a lot of “I’s” here. This is me talking about me.

    So, the sharp eyed would have noticed that the word ‘Christian’ has been slowly vanishing from my profiles, across my social media accounts. This was not unintentional.

    I lost my faith.

    I used to have a church, I went to every Sunday, pretty much without fail. I spoke to the pastor there, told him I was struggling, I was loosing my faith, asked for help. Got pretty much unhelpful platitudes in return. Additionally, around this time, a petition was going around the church, against same-sex marriage in the UK. What we really needed was more hate, distrust, and disgust going around. The well-meaning congregation probably didn’t realise it, but that was the undertones I was hearing from them. I stopped going, “what God of Love would accept that?” I slowly, very slowly, drifted back into depression, with fewer tools to aid me.

    I was shouting into the ether, asking for help from God, asking for guidance. Nothing came, nothing helped. My faith was slipping.

    Eventually, the answer to the question in my head “Is there a God?” started returning the answer ‘No’. In my head, that question had been returning ‘Yes’ since 1998. My faith broke. You’d have thought it would’ve been a quick process, but it took many, many months, slowly, painfully, tearing away. I used to think there was a plan. I used to think someone bigger than myself cared. And slowly, over time, those thoughts, beliefs, started being evaluated ‘untrue‘ in my head.

    The process of loosing my faith itself was hard, painful, and very unpleasant. Mixed into this is Guilt. A lot of Guilt. I feel I’m letting my family down, who’re all actively believing practising Christians, mostly Evangelical or Anglican.

    Slowly, my sense of self has been adjusting, my moral compass set free from what the Bible says, what my interpretation of it said, what Pastors, theologians I trusted said. I still have morals, if anything they’ve become stronger, no longer linked to an external force. Mostly, they’re the same as current liberal evangelical Christian base ethics, but stronger against homophobia. I can certainly rant about people being horrible to one another quite a lot, if you care to listen sometime.

    You might’ve worked out the gap, between my profiles changing, my faith breaking, and today, is not insubstantial. Though it was a painful process over months, it was complete back in 2014.

    Why the gap? My family. I didn’t want to tell them. I’m afraid of the reaction, I’m afraid of getting treated differently, badly. It might be a silly fear, but it’s there nonetheless. In fact, I’m wimping out by writing this here and posting it to my social media instead of contacting them. My Mum knows, I told her a while ago, I was tearing myself into bits, I had to confide in someone, but apart from that, not even the Brother I love to bits knew, though I suspect he worked it out a while back. He’s very very intelligent.

    I’m scared. I’m lonely. I’ve great friends, who have been helping. I’ve great work colleagues, one of whom in particular is the most intelligent person I’ve ever met, and though he can be a pain in the neck (he knows it), his advice has helped me greatly. The friends I’ve made in the IndieStone community as well have helped me greatly.

    I’m currently coming out of this bout of depression, the stormclouds are slowly, achingly slowly, being inched away. I can see the sunshine again, more and more; The dark thoughts about suicide in the night haven’t troubled me at all recently. But, I’m still filled with guilt. Guilt over dropping my faith. Guilt over not being the son, cousin, brother, grandson, nephew, my family expects me to be. Guilt at saying “No, a lot of the moral ‘rules’ of the modern Church are stupid, and I reject them entirely.”

    I’m still left with a void. I knew faith, I knew that assurance and belief, and now it’s gone.

    So. That’s why loosing my faith sucks. I had to say it. And I had to vent.

    If you’re my family reading this, I’m sorry, I couldn’t say this in person, I couldn’t say it via text or phone call. I’m too scared. I’m in too much pain right now. Don’t judge me, please.

     

    At this point, I’m fairly certain my faith loss is permanent. There’s a reason I’ve been describing myself as Agnostic/Don’t Know though. I truly don’t know if there is a loving God, I don’t know if any religion is right, if none are. However, whilst I’m coming out of a really dark place, I’m also not really open to conversion attempts, nor anything other than discussions about faith over a drink somewhere warm and comfortable, and the important bit here *in person*. 🙂

    Saying that, I’m filled with love for my family, my friends, and hell, pretty much everyone on this weird, wonderful, strange, horrible, horrific planet.