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@superpooped
notes for my impostor syndrome:
• no, it's not painful to walk for abled-bodied people
• no, healthy people don't usually use every chance they get to lean against walls or sit down
• no, ableds don't dream about shower stool
• no, ableds don't celebrate days when they're not in pain. because usually they're not in pain
• no, ableds don't want to stop walking mid-way, lay down on the ground, curl up and cry and whine from pain
• no, ableds aren't exhausted by their own bodies 24/7
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Dealing with Quarantine (from an actual expert)
Hello!
Today’s post is for people who are having their first taste of isolation or quarantine and are feeling a bit overwhelmed.
There’s a lot of these going around, and although they can be useful (I have no idea about specific Corona-based medical practise or finance) they seem to be written by people who are generally out and about in the world.
No offence, but what you really need is a Professional. You need… A HOUSEBOUND PERSON!
And that’s where I come in.
For those of you that are new here, I have a condition where, amongst other things, my body doesn’t create energy like it should. My mitochondria are all messed up, so, as you can imagine, that has an impact on… everything.
I am too exhausted to leave the house, or sometimes my bed. So I’ve been cared for by my lovely family for seven and a half years, and have been housebound for the last five and a half.
By now, I’m an old hand at this, so I’ll be able to help you out with some of the lesser known issues that people without that half a decade of experience just can’t tell you.
Some of this may seem strange or contradictory in places, but I don’t make the rules. This is how it is.
Choice makes a difference
You’re probably learning (or about to learn) that the one thing that makes a difference as to whether doing something or not is fun is Choice.
The number of times I’ve had someone say to me “it must be so nice to be at home all the time” is ridiculous.
The person saying it is thinking of the fun type of staying at home, where you decide to have a duvet day and watch movies and eat toast in your pants.
But now people are being faced with the less fun kind. The kind where you can’t leave.
Staying at home because you want to… fun. Staying at home because of Doom Plague Potential… not fun. (Also, bagsy “Doom Plague Potential” as a band name.)
It’s tough being uncertain when you’re going to see people, do things or get on with your life, but…
If you think about it, you are making a choice. You’re making the choice to put your health first. That’s sensible.
And if you’re careful with others who are more at risk then you’re making the choice to be kind. That’s even better.
You can do it
I’m not even meaning this in an inspirational quote sense, you can actually do this. It may be tricky, but if I can last half a decade in my house, you can last a couple of weeks, or even a couple of months.
If you’re actually sick then make sure you have people who can check up on you via the internet or phone if not in person. Seek medical attention where necessary.
Otherwise…
The Internet exists - embrace it
All that “put down your phone and live in the REAL WORLD” stuff is about to become a load of cobblers.
You will feel lonely, the Internet is a great tool to prevent that, so embrace it.
Group chats, social media, and video chats make a MASSIVE difference in the lives of people stuck at home, so utilise that.
Even when you’re watching tv, have a group chat of mates watching the same thing and talk about it as if you’re all there together. Because you are... kind of.
You can also contact plenty of mental healthcare professionals over the internet (or phone) if you feel that’s something you need. Don’t be afraid to reach out. There are people available.
The Internet isn’t real
At the same time as the internet being an amazing tool and opportunity for social interaction, it’s important to remember that it’s not a complete experience of the world.
It seems obvious when you’re able to leave the house, but it will quickly become clear that things start to feel a bit more skewed without the regular interaction of polite (or not so polite) strangers in everyday life.
Things will seem more polarised and polarising, and specific, potentially small things may seem extremely important. That’s normal, just... bear it in mind and take a deep breath before reacting to things.
TV, Radio, Things to do!
If you, unlike me, are at home as a precautionary measure instead of long term health condition you can probably do things. Hooray!
Right now that is less than you're used to, and BELIEVE ME I know that feel, bro, but you can still do things and that’s wonderful.
Imagining a lengthy period where you’re stuck at home sounds awful, but imagine it without TV, books or the internet. Or crafts. Or DIY. Or the ability to clean your clothes or yourself.
I’m trying really hard not to play the “be grateful” card here, because people have said it to me despite me struggling (or being completely unable) to do any of those things and it made me want to bite them. But also... you can likely do those things. So maybe this is the point where all those trite inspiration memes come in handy and you can embrace the things you can do.
Unless you are sick, in which case, for the love of all that is holy, do not do the things.
Stay in bed. Drink fluids. Have people check in on you as safely as possible. Resist the urge to get up and make your body fight harder than it is, because that will not help you.
Trust me, despite all those “you can do anything if you BELIEVE” quotes, it’s not strong or clever to push your body when it’s struggling. You will just use up energy your body could be using to heal you. Take it from the sick person.
Stay in bed till you feel better, and then a bit longer, just to make sure.
And resist the urge to go out in public and rub your germy self onto various surfaces.
You will come to love your Postie/Courier.
Oh, those kind humans who strive through wind and gale to bring us parcels and food, and most importantly, contact with the outside world.
A face! A new face! Possibly some small talk. You never knew that was a thing you could miss before this moment.
Will you potentially feel the need to disinfect everything you get in the post? Possibly. Will you be ever so glad to see someone who doesn’t live in your house or flat? Most definitely.
They must be protected for they are the keepers of the parcels.
Time will lose all meaning.
The only thing I can reliably liken it to is that weird week between Christmas and New Year where you don’t know what day, time or year it is. Or why you’re covered in biscuit crumbs.
If you don’t celebrate these events and have have no prior experience in this weird time warp... I’m sorry. Things are about to get real.
I genuinely forget my own age at this point.
Keep to a regular schedule.
You’re going to re-enter the world at some point but that’s going to be difficult if your schedule is all messed up.
Keeping to a normal(ish) schedule will also mean you’re more likely to sleep better, which will be handy if you do actually get sick.
If you’re going to be working from home then you’re probably going to have to use alarms to get you to do anything because otherwise you will look up and it’s three in the afternoon, you’ve done nothing and you’re still in your jim-jams.
(To be fair, if you want to work in your jim-jams that’s a totally valid choice.)
Try to stick to specific working hours if you can. It’s much easier to switch off your mind from work worries when you’ve got commute time in the middle, so having set hours or a signal to yourself (like changing clothes) that the work day is over will help you wind down a bit easier. I remember that much from my healthy freelance days.
Exercise?
I imagine that if you’re housebound without being sick you’re probably going to have a ton of pent up energy.
I’ll admit I’m completely guessing here, because energy is quite literally what my body is rubbish at producing so exercising makes me worse, which is why I’m stuck in my house unable to do anything in the first place.
Looking back at those heady years before I got sick, however, I would get pretty restless being stuck inside during that weird post-Christmas week, so it’s probably good to try and exercise some of that off.
Stretches, yoga, kick a football about in the garden. Whatever floats your boat.
You’ll probably sleep better and it’s good for releasing endorphins too.
Again, if you’re sick, don’t do this. Just don’t. Coronavirus targets your respiratory system so nobody wants you to be doing star jumps like a muppet. Go lie down.
Touch withdrawal
If you live on your own, or even if people inside your house are avoiding contact to prevent potential contamination you may experience mild touch withdrawal. I don’t know if that’s an official term, but that’s what I’m calling it.
You can counter this with:
Blankets, duvets, or weighted blankets
There’s a reason people are given shock blankets after trauma, and that’s to simulate a hug and release the associated endorphins. Having a blanket, duvet or weighted blanket around you will do that same thing.
Pets
Having access to a furry (or scaly or feathered) friend will help with loneliness and touch withdrawal. A lot of them will be loving the chance to spend more time with you.
ASMR
I’ve had people tell me that ASMR videos help them with loneliness and touch withdrawal.
ASMR stands for Autonomous Sensory Meridian Response and is basically a tingly feeling of calm and being cared for that a person can experience when watching or listening to certain triggers.
YouTube is full of people tapping on bottles and turning books pages, and it can be really useful.
I was a bit dubious to begin with, but honestly the ones where the person pretends to cut your hair make me into a giant pile of goop.
Not the same as long term isolation
This is going to pass. You will be able to leave the house again, and it will be relatively soon.
When it does, please be respectful of those who are still here.
Yes, a two week quarantine might give you a tiny glimpse into what it’s like to be housebound, but it won’t make you an expert in long term isolation due to illness or disability. That’s a whole other ball game.
Please do not equate the two, because it honestly feels a randomer in a bar who has spent two minutes thinking on a topic telling you about something you have a doctorate in.
Coronavirus is scary, and quarantine or self-isolation is not something you’re used to but it is temporary.
Finally
If disabled or sick people are getting salty on the internet it’s because they have reason to be.
A lot of us have been stuck like this for years or even decades, and many of the options that would make things much more accessible for us have only magically become possible now there’s a threat to the general, abled population.
It doesn’t help that lots of people are trotting out the old “it’s only the old and sick who are in danger”. Thanks for that, mate. So glad that it’s only us sickies (and oldies) who might die and not the important, useful people that are in danger.
Many of us do not have that light at the end of the tunnel when we can leave the house and just get on with our lives. I have no idea when or if I will be able to rejoin society fully, or even partly. And I just have to get on with it.
So take this opportunity to be a little more mindful of those people.
I do hope this helps people who are nervous about being isolated. Keep calm. It will be alright.
Originally posted on superpooped.blogspot.com
Living that period life.
Doubly fun when you’re a Spoonie living that ChronicIllness or Disabled life!
(Shout out to the endometriosis community on this one - you guys are badass.)
I got round to doing another of these. Yay, cramps.
I can finally share my piece for Cause and Effect Magazine on what it’s like to live with #mecfs. Issue 2 (with my piece) now available.
https://superpooped.blogspot.com/2018/12/cause-and-effect-piece.html
Free printer. May need some tuning.
Hahahahahaha omg
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Dear Marvel,
In Avengers 4, can we please get confirmation that Clint Barton uses invisible hearing aids? Just one tiny “I can’t hear you; I turned them off” joke. Please?
Sincerely,
The fans who don’t ask for much but know how much positive change will come from one tiny joke.
To those who suffer with low mood, depression or suicidal thoughts, please listen. You are not a burden. I may not know you, but every person has inherent worth, something they bring to the world that no one else can. Even more than that, your pain means that you can recognise and understand another’s pain. Pain, more often than not, breeds understanding and kindness, and understanding and kindness are exactly what this world needs. The world is therefore better, because you are in it.
I wrote a blog post on depression, specifically for those who suffer from other chronic illness who also have to deal with low mood or depression, but I wanted to share these words with everyone. Especially as it’s coincided with Suicide Prevention Day. If you want to read the whole thing it’s here - http://superpooped.blogspot.com/2018/09/me-symptoms-and-tips-dealing-with.html
You are cordially invited to my party, in person, or online. Let's celebrate being awesome. http://superpooped.blogspot.com/2018/06/gatsby-for-me-online-vintage-charity.html
I used to think Transfiguration would be my favourite class, but spending hours doing in Hogwarts Mystery is just making me think about the ethical implications of turning innocent animals into inanimate objects. Does the animal remember being the object? Are they aware while they’re forced into another shape? Does it hurt?
Also, if you need a pincushion, what are the chances you’ll have a porcupine just lying around the house?
PART ONE - PART TWO Hello again, my lovely loves! Part two, and let's get right into it. Muscle Pain Most people have had ...
Part 2 of ME Symptoms and Tips: Pain is now up! If you have any tips of your own, please share in the comments to keep your fellow spoonies as pain-free as possible!
Anya is live and ready to show you everything. Watch her strip, dance, and perform exclusive shows just for you. Interact in real-time and make your fantasies come true.
Free to watch • No registration required • HD streaming
PART ONE - PART TWO Hello my lovely loves! I wasn't planning on posting again so soon, but as it's ME Awareness Month and I'd jus...
Part one of my pain piece in my series on ME symptoms and tips is up. The rest will follow tomorrow.
Why Hogwarts Mystery helps you understand Chronic Illness
Full disclosure. I am a massive Harry Potter fan. I’ve read the books so much that the pages are falling out, and I’m still kind of pissed I never got my Hogwarts letter. So of course when the Harry Potter Hogwarts Mystery game came out and I could get finally my wand and board the Hogwarts Express I was on it like a car bonnet.
A couple of days into the game I started to see posts online of people getting incredibly frustrated with how low the player’s energy level is and how long it takes to complete tasks. Players have to stop and wait for four minutes for the characters timer to gain another energy point before continuing. Larger tasks with greater rewards can take all day.
They are down right incredulous to find out it takes energy to “take a break” or “rest”.
Many are calling for the game to be altered to make the game easier to play and more realistic. But, the thing is, the energy restrictions had barely registered for me, because that IS how I live my life. That’s how millions of us live our lives when we’re chronically ill. It’s perfectly normal for me to have to stop what I’m doing because I don’t have enough energy. I have a condition that means my cells can’t produce energy like it should. I can’t work, I can’t watch TV, I can only see one friend a month, and I haven’t left the house in three and a half years. There are hundreds of thousands more just like me.
As for the “resting” issue, what most people consider rest and relaxation, like watching tv or playing a game on your phone for example, is another tiring activity for sufferers. For us, resting is lying down in a darkened room trying to do nothing but concentrate on our breathing, because it’s the only way our energy levels recoup.
What JK Rowling, Warner Brothers, and Jam City have done is make a perfect example of what it’s like to live with a chronic illness. As frustrating as it might be for some people, I hope they don’t change it. It might give them an idea of what it’s like to do it in real life. (Originally posted on superpooped.blogspot.co.uk)
some mobile company: *Takes pay2win to the extreme, hoping people who love harry potter enough to still play this become so frustrated that they start paying money and hopefully turn some people with poor impulse control into whales in the process*
some liberal online: “But don’t you see, the way they’re trying to habitualize vulnerable people into spending loads of money is actually progressive and great representation! You are all bad people for complaining about this”
Dude, they’re not deliberately trying to represent us, that would be ridiculous. The game has its problems, but that doesn’t change the fact that it is STARTINGLY similar to our lives.
The flaws of the game and the frustration, negative emotions and willingness to do just about anything is exactly how it feels to be chronically ill. The flaws are the REASON this analogy makes sense. (Except obviously in real life we can’t pay our way out of illness.)
You’re not wrong to be pissed off with a shitty situation, but neither are us disabled people. Both are valid.
Why Hogwarts Mystery helps you understand Chronic Illness
Full disclosure. I am a massive Harry Potter fan. I’ve read the books so much that the pages are falling out, and I’m still kind of pissed I never got my Hogwarts letter. So of course when the Harry Potter Hogwarts Mystery game came out and I could get finally my wand and board the Hogwarts Express I was on it like a car bonnet.
A couple of days into the game I started to see posts online of people getting incredibly frustrated with how low the player’s energy level is and how long it takes to complete tasks. Players have to stop and wait for four minutes for the characters timer to gain another energy point before continuing. Larger tasks with greater rewards can take all day.
They are down right incredulous to find out it takes energy to “take a break” or “rest”.
Many are calling for the game to be altered to make the game easier to play and more realistic. But, the thing is, the energy restrictions had barely registered for me, because that IS how I live my life. That’s how millions of us live our lives when we’re chronically ill. It’s perfectly normal for me to have to stop what I’m doing because I don’t have enough energy. I have a condition that means my cells can’t produce energy like it should. I can’t work, I can’t watch TV, I can only see one friend a month, and I haven’t left the house in three and a half years. There are hundreds of thousands more just like me.
As for the “resting” issue, what most people consider rest and relaxation, like watching tv or playing a game on your phone for example, is another tiring activity for sufferers. For us, resting is lying down in a darkened room trying to do nothing but concentrate on our breathing, because it’s the only way our energy levels recoup.
What JK Rowling, Warner Brothers, and Jam City have done is make a perfect example of what it’s like to live with a chronic illness. As frustrating as it might be for some people, I hope they don’t change it. It might give them an idea of what it’s like to do it in real life. (Originally posted on superpooped.blogspot.co.uk)
Look i love this outlook. But lets get facts straight ppl. The Devs and JK Rolling DO NOT CARE FOR YOUR ILLNESS.
I’m sorry. But this is a cash grab.
I’m so very sorry. They are not making a game to increase visibility to ppl like you.
I cannot express how sorry I am. They do not care about your daily struggle, they did not make a game with the MC having the same illness as you, you and ppl like you did not cross their minds one bit, if you died tomorrow they would not shed a single tear, all they care about is money.
The energy system is there so ppl HAVE to pay to continue the story. It is like that way so ppl have to shell out money to even enjoy the game.
A game or anything showing your daily struggle will be a massive achievement for any industry but this is not one of those times.
You have to understand that they have to change it because at the end of the day they didn’t develop it with you in mind and if you praise them they will use you as a meat shield
Dude, I know it’s not deliberate. That would be ridiculous. I’m aware that they’re thinking of cash not people.
It’s just a surprisingly good representation of thousands of people’s lives. A happy accident. And if it helps even one person understand us more then I’m happy.
Well its fucking frustrating and i wish you didn’t have to live like that. Consider me an ally in your struggle for more representation.
Thanks, pickle! You are a star of the highest order.
Why Hogwarts Mystery helps you understand Chronic Illness
Full disclosure. I am a massive Harry Potter fan. I’ve read the books so much that the pages are falling out, and I’m still kind of pissed I never got my Hogwarts letter. So of course when the Harry Potter Hogwarts Mystery game came out and I could get finally my wand and board the Hogwarts Express I was on it like a car bonnet.
A couple of days into the game I started to see posts online of people getting incredibly frustrated with how low the player’s energy level is and how long it takes to complete tasks. Players have to stop and wait for four minutes for the characters timer to gain another energy point before continuing. Larger tasks with greater rewards can take all day.
They are down right incredulous to find out it takes energy to “take a break” or “rest”.
Many are calling for the game to be altered to make the game easier to play and more realistic. But, the thing is, the energy restrictions had barely registered for me, because that IS how I live my life. That’s how millions of us live our lives when we’re chronically ill. It’s perfectly normal for me to have to stop what I’m doing because I don’t have enough energy. I have a condition that means my cells can’t produce energy like it should. I can’t work, I can’t watch TV, I can only see one friend a month, and I haven’t left the house in three and a half years. There are hundreds of thousands more just like me.
As for the “resting” issue, what most people consider rest and relaxation, like watching tv or playing a game on your phone for example, is another tiring activity for sufferers. For us, resting is lying down in a darkened room trying to do nothing but concentrate on our breathing, because it’s the only way our energy levels recoup.
What JK Rowling, Warner Brothers, and Jam City have done is make a perfect example of what it’s like to live with a chronic illness. As frustrating as it might be for some people, I hope they don’t change it. It might give them an idea of what it’s like to do it in real life. (Originally posted on superpooped.blogspot.co.uk)
As a game programmer, I can only say that the game is outright exploitative of their player. And while you may have had an interesting connection based on the mechanics, but I have to say there is nothing to reinforce that through the game its self. The game never hints at your character suffering from an affliction, its just used to either annoy the player to spend, or to emotionally manipulate the player to spend.
For instance the first big point the game is trying to get you to spend money is in ReversalYoutube’s tweet where the game is choking your character and saying to cash up or wait 20 minutes to proceed. And this leads into another issue with the game, that being the timer in the top middle of the screen, which if you dont finish an activity, the activity resets. In theory this means Jam City could design a situation where you HAVE to pay in order to progress towards the end of the game, preying on a sunk cost fallacy of all the time you have put in the game.
There are plenty of games that deal with illness/chronic illness/mental illness better than an exploitative game, and I highly recommend looking them out. “That Dragon, Cancer” was made by the parents about their child’s cancer. “Hellblade: Senua’s Sacrifice” deals with psychosis. “Spec Ops: The Line” is all about PTSD. Hell “MGSV: The Phantom Pain” is about the phantom feeling of a lost limb.
There are just many games that do what Hogwarts Mystery School does and better, without exploiting their players. Its a game designed mainly aimed at a young demographic and while I stray away from “think of the kids” as an argument, but its really easy to spend money if a credit card is attached to that phone.
I think you’re right. I don’t think for one minute it was a deliberate move on their part to make this to do with disability, and their motives are questionable.
However, the parallels struck me so strongly that I chose to write about it. I’m not saying the game is perfect, but I am saying that playing this could give people an insight into a chronically ill person’s life (even though that wasn’t intended by the developers) specifically BECAUSE of those short comings. The lack of energy and the frustration and other negative emotions it causes are EXACTLY what it’s like in real life.
(Except obviously there isn’t a way to buy yourself out of the situation.)
Thanks for the info on the other games, I’ll check them out!
Why Hogwarts Mystery helps you understand Chronic Illness
Full disclosure. I am a massive Harry Potter fan. I’ve read the books so much that the pages are falling out, and I’m still kind of pissed I never got my Hogwarts letter. So of course when the Harry Potter Hogwarts Mystery game came out and I could get finally my wand and board the Hogwarts Express I was on it like a car bonnet.
A couple of days into the game I started to see posts online of people getting incredibly frustrated with how low the player’s energy level is and how long it takes to complete tasks. Players have to stop and wait for four minutes for the characters timer to gain another energy point before continuing. Larger tasks with greater rewards can take all day.
They are down right incredulous to find out it takes energy to “take a break” or “rest”.
Many are calling for the game to be altered to make the game easier to play and more realistic. But, the thing is, the energy restrictions had barely registered for me, because that IS how I live my life. That’s how millions of us live our lives when we’re chronically ill. It’s perfectly normal for me to have to stop what I’m doing because I don’t have enough energy. I have a condition that means my cells can’t produce energy like it should. I can’t work, I can’t watch TV, I can only see one friend a month, and I haven’t left the house in three and a half years. There are hundreds of thousands more just like me.
As for the “resting” issue, what most people consider rest and relaxation, like watching tv or playing a game on your phone for example, is another tiring activity for sufferers. For us, resting is lying down in a darkened room trying to do nothing but concentrate on our breathing, because it’s the only way our energy levels recoup.
What JK Rowling, Warner Brothers, and Jam City have done is make a perfect example of what it’s like to live with a chronic illness. As frustrating as it might be for some people, I hope they don’t change it. It might give them an idea of what it’s like to do it in real life. (Originally posted on superpooped.blogspot.co.uk)
Yeah actually I’m pretty sure they just want players to spend money for micro transactions lmao
Dude, I know it’s not deliberate. That would be ridiculous. I’m aware that they’re thinking of cash not people.
It’s just a surprisingly good representation of thousands of people’s lives. A happy accident. And if it helps even one person understand us more then I’m happy.
Anya is live and ready to show you everything. Watch her strip, dance, and perform exclusive shows just for you. Interact in real-time and make your fantasies come true.
Free to watch • No registration required • HD streaming
Why Hogwarts Mystery helps you understand Chronic Illness
Full disclosure. I am a massive Harry Potter fan. I’ve read the books so much that the pages are falling out, and I’m still kind of pissed I never got my Hogwarts letter. So of course when the Harry Potter Hogwarts Mystery game came out and I could get finally my wand and board the Hogwarts Express I was on it like a car bonnet.
A couple of days into the game I started to see posts online of people getting incredibly frustrated with how low the player’s energy level is and how long it takes to complete tasks. Players have to stop and wait for four minutes for the characters timer to gain another energy point before continuing. Larger tasks with greater rewards can take all day.
They are down right incredulous to find out it takes energy to “take a break” or “rest”.
Many are calling for the game to be altered to make the game easier to play and more realistic. But, the thing is, the energy restrictions had barely registered for me, because that IS how I live my life. That’s how millions of us live our lives when we’re chronically ill. It’s perfectly normal for me to have to stop what I’m doing because I don’t have enough energy. I have a condition that means my cells can’t produce energy like it should. I can’t work, I can’t watch TV, I can only see one friend a month, and I haven’t left the house in three and a half years. There are hundreds of thousands more just like me.
As for the “resting” issue, what most people consider rest and relaxation, like watching tv or playing a game on your phone for example, is another tiring activity for sufferers. For us, resting is lying down in a darkened room trying to do nothing but concentrate on our breathing, because it’s the only way our energy levels recoup.
What JK Rowling, Warner Brothers, and Jam City have inadvertently done is make a perfect example of what it’s like to live with a chronic illness. As frustrating as it might be for some people, I hope they don’t change it. It might give them an idea of what it’s like to do it in real life. (Originally posted on superpooped.blogspot.co.uk) Edit: Yes, I know it’s for money, and it’s been done it other games, and they’re not magical fairy godmothers trying spreading understanding about chronic illnesses. However, it is an extremely close example of our lives, and it’s only really hit me during this games because of the reactions to it. If this changes even one person’s perception a little bit to help them understand a sick person more, then that’s enough for me.
It can still fuck off though. I can’t have my full energy in real life I don’t want it lacking in my fantasy life too.
I lolled.
Why Hogwarts Mystery helps you understand Chronic Illness
Full disclosure. I am a massive Harry Potter fan. I’ve read the books so much that the pages are falling out, and I’m still kind of pissed I never got my Hogwarts letter. So of course when the Harry Potter Hogwarts Mystery game came out and I could get finally my wand and board the Hogwarts Express I was on it like a car bonnet.
A couple of days into the game I started to see posts online of people getting incredibly frustrated with how low the player’s energy level is and how long it takes to complete tasks. Players have to stop and wait for four minutes for the characters timer to gain another energy point before continuing. Larger tasks with greater rewards can take all day.
They are down right incredulous to find out it takes energy to “take a break” or “rest”.
Many are calling for the game to be altered to make the game easier to play and more realistic. But, the thing is, the energy restrictions had barely registered for me, because that IS how I live my life. That’s how millions of us live our lives when we’re chronically ill. It’s perfectly normal for me to have to stop what I’m doing because I don’t have enough energy. I have a condition that means my cells can’t produce energy like it should. I can’t work, I can’t watch TV, I can only see one friend a month, and I haven’t left the house in three and a half years. There are hundreds of thousands more just like me.
As for the “resting” issue, what most people consider rest and relaxation, like watching tv or playing a game on your phone for example, is another tiring activity for sufferers. For us, resting is lying down in a darkened room trying to do nothing but concentrate on our breathing, because it’s the only way our energy levels recoup.
What JK Rowling, Warner Brothers, and Jam City have done is make a perfect example of what it’s like to live with a chronic illness. As frustrating as it might be for some people, I hope they don’t change it. It might give them an idea of what it’s like to do it in real life. (Originally posted on superpooped.blogspot.co.uk)
Look i love this outlook. But lets get facts straight ppl. The Devs and JK Rolling DO NOT CARE FOR YOUR ILLNESS.
I’m sorry. But this is a cash grab.
I’m so very sorry. They are not making a game to increase visibility to ppl like you.
I cannot express how sorry I am. They do not care about your daily struggle, they did not make a game with the MC having the same illness as you, you and ppl like you did not cross their minds one bit, if you died tomorrow they would not shed a single tear, all they care about is money.
The energy system is there so ppl HAVE to pay to continue the story. It is like that way so ppl have to shell out money to even enjoy the game.
A game or anything showing your daily struggle will be a massive achievement for any industry but this is not one of those times.
You have to understand that they have to change it because at the end of the day they didn’t develop it with you in mind and if you praise them they will use you as a meat shield
Dude, I know it’s not deliberate. That would be ridiculous. I’m aware that they’re thinking of cash not people.
It’s just a surprisingly good representation of thousands of people’s lives. A happy accident. And if it helps even one person understand us more then I’m happy.
