"I find penguins at present the only comfort in life. One feels everything in the world so sympathetically ridiculous; one can't be angry when one looks at a penguin." – John Ruskin
Author: Danni
The Purple Penguin! 31 year old autistic geek, living in bed with severe ME (myalgic encephalomyelitis). Likes gaming, purple and penguins.
Today I was reminded of a descriptive pain scale that was going around Twitter a couple of years ago. Today is also a bad pain day. Most of the time I try and get my pain low enough so that I can try and distract myself from the worst of it, and I also have poor bloody awareness so sometimes I’m not consciously aware of how much pain I’m in though it’s still affecting how I’m feeling and what I can do. I’m one of the lucky ones who between my medication, heated blanket/pad/penguins and distraction, sometimes I can still do things.
No pain scale is perfect, but I do better with ones that describe how pain is affecting my ability to do stuff rather than in comparison to the worst pain I’ve experienced or can think of. As today is a bad day, I’ve been going between an 8 and a 9.5 on the below scale. I can’t remember the last time I was below a 6, which was when I was on IV morphine. Usually I bounce between a 7 and a 9 depending on how long I’ve been since taking painkillers and if I’ve moved or had personal care done. Pain sucks but after years of it, you learn to work with it as much as possible.
0-10 Scale of Pain Severity. Image description below.
0-10 SCALE OF PAIN SEVERITY
Severity – Description of Experience
10 – Unable to Move I am in bed and can’t move due to my pain. I need someone to take me to the emergency room to get help for my pain.
9 – Severe My pain is all that I can think about. I can barely talk or move because of the pain.
8 – Intense My pain is so severe that it is hard to think of anything else. Talking and listening are difficult.
7 – Unmanageable I am in pain all the time. It keeps me from doing most activities.
6 – Distressing I think about my pain all of the time. I give up many activities because of my pain.
5 – Distracting I think about my pain most of the time. I cannot do some of the activities I need to do each day because of the pain.
4 – Moderate I am constantly aware of my pain but I can continue most activities.
3 – Uncomfortable My pain bothers me but I can ignore it most of the time.
2 – Mild I have a low level of pain. I am aware of my pain only when I pay attention to it.
1 – Minimal My pain is hardly noticeable.
0 – No Pain I have no pain.
(Apologies for the poor formatting. I had to use Google’s image reader thingy and I’m struggling to concentrate because pain.)
Optician’s appointment took it out of me, so I’m not going out today and will probably be sleeping soon. I’m having a Greggs vegan sausage roll for tea as I’ve been wanting to try it for a while. It’s really nice and I’ll probably get them again.
One of carers burnt a hole in Nicky’s body, so I needed to get a replacement. Grey is no longer an option, so I went for marshmallow pink, which is pretty much lilac so I’m happy. So is Nicky. Isabella is slightly jealous but she’s called that because grey adult penguins usually have isabellinism. They’re my main bed heaty penguins so I’m glad to have them.
Today I spent most of the day asleep. Last night I managed to soak my bed lying on my drink tube, which meant needing an emergency clothing and bedding change. It took hours to get my body to calm down after that, so it’s not surprising I needed to sleep 15 hours. The first clothing Johan grabbed for me was my Christmas dress, so I’m currently wearing that. It’s very soft and has penguins on it, so I like it 🙂
I woke up just after the evening carers had left, which is a bit annoying. Sammie and Johan were chatting in our group chat. Being zombie brained I couldn’t contribute much, but I’m hoping to talk to her better tomorrow.
I have the optician coming out for my eye test tomorrow. I’m doing better with light overall than last time so it should be a bit easier. I know I’m significantly more short sighted than I was, because I struggle to see as far as my doorway. Hopefully new glasses will help this.
I still want to go out to watch fireworks tomorrow night. I’d need to be feeling a lot better than I am right how. Hopefully more sleep will fix it. Just need to do a few things first. Brains…
Video gaming is one of my favourite activities, and it’s very unusual for me to go a day without playing at least one for a few minutes. Because my hands are a bit silly I don’t currently play any console games, but I do have a selection I play on my tablet, plus one I play on my desktop computer.
This is the ultimate game for people who don’t have much time to play games. If you want, you can even let it play itself. The idea is that you’re a god or goddess, and you oversee the activities of the hero (or heroine) that worships you in a role playing game. You can’t directly control their actions, but you can influence them and that impacts their personality. You can also tell them to do things via godvoice, but there’s no guarantee they’ll listen to you. Like most RPGs, your hero goes on quests to gain experience and level up, collects loot and equipment, fights monsters and has various goals they’re working on. They can decide to keep pets, make friends (the heroes of other players) and join a guild. If you actively play the game then your hero makes more progress, but they’ll continue even if you don’t, and there’s even an option to turn off all direct interaction with zero player mode. I really enjoy reading my heroine’s antics, and even if I only have a couple of minutes I try to send a bit of encouragement and maybe see what the guild is up to.
I’ve been playing this for a few years now, and it’s another game that is suitable for those who can only check in for a short while and don’t want too much pressure. The aim is to collect cats by putting out food and items for them to play with. They don’t come immediately, but after a bit they’ll turn up and you can take photos. Afterwards they leave fish that you can use to buy more food and items. There are rare cats that will only appear with certain items or food, so it takes a while to get them all. I try to get in at least once a day, as there’s a daily password that if entered for five days gives free food.
This is Android only, but is the best solitaire app I’ve found. There are no ads or in game purchases, it’s open source, and it has 15 different games. One of my favourite features is that you can have different card appearances for each game, and you can have the suits be different colours so it’s easier to tell them apart in games where that’s important. You’re also able to cheat by showing hints, automatically moving or mixing the cards, which is great for reducing my frustration when I’m not doing well. I mostly play patience/klondlike, spider solitaire, grandfather’s clock and mod3 on the easiest settings as part of my settling down routine or when I need something easy but engaging to distract myself.
This is my current obsession. The idea is simple: connect the coloured dots without crossing the lines. It starts off very easy but gradually gets harder. There are in app purchases for extra hints, different colours and extra level packs, and buying a level pack also removes the ads. I really like that you can label the different dots so it’s easier to see them. There are different versions that include bridges or walls, but my favourite is just the standard game. My only problem is I’ve only got four packs to go before I’ve done them all, and I’m not sure what I’ll do then.
I really like digital colouring, but find having to choose the colours myself anxiety provoking. Colour by number is much better for me. I originally was using a cross-stitch app but Sammie introduced me to this one and I much prefer it. There’s a one off in app purchase to remove ads and get unlimited hints, and once pack that costs, but there are thousands of free pictures and more are added every day. I like to colour in while listening to podcasts as it keeps my hands busy so I can concentrate better.
This game is really relaxing so long as you have good colour perception. The aim is to move the pieces so that they are arranged by their hue in as few moves as possible. The music is very gentle, and though it starts pretty easily it does get more difficult in the later levels. You get 15 prisms (currency) or 5 games free for logging in each day, and more can be bought using in app purchases or earned by watching ads. I’ve previously run out of levels so now I try and ration myself so I still have some to play when I need to relax.
When I’m able to concentrate more, I like playing games with more of a storyline. Whispers of a Machine is a point and click (point and tap?) sci-fi game where you play as Vera, a technologically augmented detective trying to solve murders in a small town in a post AI world. I really like this kind of setting, and as the game isn’t timed it doesn’t stress me out too much. The different dialogue options affect what powers you get as you progress through the game and I like that you can’t really lose. There’s been a couple of times I’ve had to look up the walk through as I’ve forgotten what certain abilities are needed, but overall I’m enjoying it. I got it on sale but I think I’d be happy having paid full price for it, though maybe I’ll change my mind once I’ve finished.
My character’s profile for World of Warcraft (since I’m not on my computer to take a proper screenshot)
When I am well enough to go on my computer, World of Warcraft is the game I play. It’s a massive multiplayer online role playing game involving two factions in a fantasy setting and a ton of story and content. I’ve been playing it for over a decade now, and the majority of that has been on my night elf priestess Danni. Unlike a lot of other people, I’ve been really enjoying the latest expansion and am mostly frustrated by not being able to play as much as I’d like. I’m lucky to be in a really friendly guild who are understanding about my frequent absences and don’t kick me out. It’s the only complicated game I can manage because I’ve been playing it so long. I kinda wish I’d taken the pumpkin off her head before last logging off so you could see her face though 😛
I’m hoping to do a proper catch up post this month (mostly for future Danni’s benefit) but this week has been a bit of a rollercoaster.
The Good – This week was half term for Sammie, and she was able to come over on Tuesday which was awesome. I wasn’t up to getting out of bed, but it was awesome seeing her. We mostly just chatted and had a takeaway. I’m really happy she likes spending time with me, and that she appreciates my silliness. She’s awesome.
Also on Tuesday the physiotherapist came out to try and help with my left leg, which has decided it doesn’t want to be straight. The appointment went about as well as it could, and they gave me some exercises to try and coax it into behaving. They understood that I have to be careful about energy use so have reduced the amount I’m to do and I’m to use my own judgement about how often and when to increase them. They also said they’d ask someone about finger splints which I’m hoping will make my hands more reliable (as half my problems using them is my fingers bending backwards).
On Thursday I managed to go on my computer. It was freezing a lot when I was trying to use it, so I spent most of my time doing a reformat. It seems to have helped, though I’ve yet to reinstall everything I need. I also went into World of Warcraft and though I didn’t get the Headless Horseman’s mount this year (it’s only been 10 years of trying) I did manage to collect enough treats to get one of the Hallows End pets before having to come off.
The not so good – My digestive system really isn’t happy with me at the moment. I’m back to bringing up food a day after eating it, it’s being really crampy and generally slow, and my usual methods of sorting it out aren’t as effective as normal. When it has been moving it’s been when I’m alone so I’ve been having to ask Johan to come home which isn’t ideal. I’m hoping it sorts itself out soon.
I’ve had a cold for the past few weeks and it’s not shifting. It’s frustrating as it means I’m less able to do stuff. The worst part is my nose getting blocked when I’m asleep, and instead of just swapping to breathing through my mouth I’m woken up feeling like I’m suffocating. I can’t wait for this cold to go so I can sleep my normal level of terribleness.
I’m a bit sad I’m not well enough to go watch the local fireworks display tonight. I’ve got payback from the physio coming out and Sammie being here, so even going into the living room would be too much, nevermind outside. I really enjoyed it last year. There’s another display on Tuesday evening that’s close enough that I’d be able to go if I’m over this payback and get over this cold, but I’m probably being a tad too optimistic. Johan has gone out to the pub he usually gets breakfast from after Parkrun as the landlord is leaving, so I’m home alone tonight. I’m glad I have my earplugs.
Overall I’m still really happy, especially from seeing Sammie. Just wish my body would behave better and that chronically ill peoples were exempt from normal people illnesses like colds. I like being able to breathe.
