This game is just a small peek at what I go through on a day to day basis living with chronic pain and fatigue and does not cover all facets of my life or this illness. This is soley based off of my experience and is by no means intended to speak for all people with fibro. There are curse words in it as well as some of my less than pleasant experiences with doctors, medication, depression, and suicidal ideation. Some of this content may be triggering.
[[PLAY FIBROMYALGIA SIMULATOR]] GOOD MORNING
It's 9 am. You didn't sleep very well last night because your back was hurting. You're exhausted. You have to be at a doctors appointment in an hour. You don't have much time or energy, so you need to pick between taking a shower and making breakfast. You know you won't be able to do both.
[[Take a shower]]
[[Make breakfast]]You pop up out of bed and try to stand up but you fall back on to the bed. You continue to lie there for a bit to catch your breath. After a few minutes you get up and walk, slowly, to the bathroom. You take off your clothes and get in the shower, turn on the water and reach for the shampoo. As you're opening the shampoo bottle your hands start to hurt and you drop the bottle. FUCK. Shampoo all over the shower. You get out of the shower for fear of slipping and falling and you use the shower head to rinse off the shampoo. You abort your shower mission because you're already running late.
You put on some clothes and check your phone. Your friend who is giving you a ride to the doctor texted you ten minutes ago saying he was waiting [[outside]].You're really exhausted. You go to the fridge and open it. You see eggs and bacon but you don't think that you have the energy to make them. You grab a box of saltines and proceed to eat half the package.
You get a text from your friend who is giving you a ride to the doctor saying that he's on his way. You get dressed, putting on the first items of clothing that you see. You don't have the energy to try to look nice.
Your friend texts you to say that he's arrived and is waiting [[outside]].You run out the door of your apartment and to the elevator. FUCK. That was a bad idea. Now both your legs and your back really hurt. You get out of the building and hobble slowly to your friends [[car]].When you arrive at the doctors office, you sign in at the receptionist desk and say that you have an appointment. The receptionist scowls at you.
You apologize profusely. She sighs loudly and hands you a giant pile of [[paperwork]]. You spend a long time filling out the paperwork.You're having a hard time with some of it. Fuck. What's your mother's social security number? You can't remember. You're experiencing brain fog.
Your name is called. Your not done filling out paperwork so you take the giant pile [[with you]].The doctor asks you what the cause of the visit is. You explain that you've been having back pain on and off since you were a teenager, but for the last 10 months you've been in pain nearly constantly. Most of the time your whole body hurts, though sometimes it's just your back and legs. You also have frequent stomach problems and diarrhea. Sometimes if anything touches or brushes against you, it just feels like pain. You're tired all the time.
"Well if you've been in pain for so long why didn't you go to a doctor sooner?" your doctor asks.
[[Tell the truth]]
[[Say something that will get you through this uncomfortable conversation sooner]]"Generally my experiences with doctors have been really unpleasant. I'm kind of afraid of doctors because in the past I haven't been listened to which [[didn't]] exactly make me excited about seeing one again.""I just [[didn't]] get around to it."The doctor rolls her eyes at you. You begin to feel more and more uncomfortable.
"Did you gain any weight before the pain started?"
"Do you exercise at all?
"Yes, I do yoga at least once a week and I walk almost every day because I don't have a car, but walking seems to exacerbate my pain, and sometimes it's really difficult and painful to walk."
"I don't really know what yoga is. Here's a list of stretches that I want you to do. Also you need to start walking every day."
The doctor hands you a review of the appointment and a list of stretches. Did that all really just [[happen]]?You go home. You feel pretty frustrated and like you weren't listened to at all. You are too tired to do much of anything and you sleep through the rest of the [[day]].
You wake up. It's night time. You feel groggy and out of it but you decide to make some food. You try to make as much as you can so that you'll have leftovers to reheat when you don't have energy later.
You sit down with your food and marathon watch some cartoons. Not long into the cartoon you realize that you need to go to the bathroom, NOW. You run to the bathroom and have awful diarrhea for a really long time. This is irritable bowel syndrome. People with fibro often have [[this]].THE NEXT DAY
You wake up. It's 11 am. You feel like shit. Again. You try to muster the energy to call some psychiatrists. You've struggled with depression, anxiety, and complex PTSD most of your life and have been on and off medication for it. Your last psychiatrist had you on meds that were working at making your mental health issues more manageable, but he stopped taking your insurance, so you had to stop seeing him. You've been looking for a new psychiatrist for about a year now, calling every psychiatrist listed on your insurance website. Many of them have not returned your calls, and the ones that do are not taking appointments. You're feeling pretty discouraged. You call some more psychiatrists that you were referred to, most of them don't answer their phones, but one finally does! You're able to schedule an appointment, but it's for three weeks from now. [[Cool]].You get a call from your friend. They ask if you want to come out to a bar tonight.
"[[I think I'm not feeling well enough to come out tonight]]."
"[[Uhh, sure. It will probably take me a long time to get there though... I'll see you tonight.]]"You decide to take a bath and smoke some weed to ease your body pain a little bit. You were gifted this weed from a friend. It's a special strain that is low in THC and high in CBD. It tends to work better at relieving pain than ibuprofen does. You settle into the bubbles and relax.
[[0oOoOoO0ooo0]]You primp yourself for your night out. Your makeup is kind of smudged because your hands are shaky. You don't give a fuck because you're hot. As in you're attractive. But also you have a heat sensitivity because that's common with fibromyalgia.
You are really anxious about getting on public transit. It's going to take at least half an hour to get to the bar, and you'll be spending a lot of that time on the bus. You decide that you should take your cane with you. This is a cane that a friend gifted you. It has a base with four legs and one of the rubber ends of the legs is missing, so you've attempted to cover it with duct tape to make it a bit more level, but it's still not quite even.
You walk to the bus stop. The bus takes 11 minutes to get to arrive. When you get on the bus, you realize that it's extremely crowded and there are no seats. Because it's so crowded people are brushing against you as the bus moves and all sensation is just registering as pain. After a few stops of you holding on to a strap as tightly as you can, while your legs are in screaming pain and you are trying your hardest not to fall over, someone finally offers you a seat. Riding on this bumpy bus is really making you flare up. Your neck. and shoulders, and back and legs all hurt [[tremendously]].THREE WEEKS LATER
You're at your psychiatrist's office for your first appointment. You talk for a long time about the meds you used to be on. The psychiatrist then asks you about the rest of your medical history and you spend the rest of the session discussing your long list of symptoms. He says that while he can not officially diagnose it because it's not his specialty, that it sounds like it may be fibromyalgia and that you should see a doctor. You explain your experience of the last doctor you saw. He reccomends that you see a different doctor, potentially a rheumatologist. He prescribes you a low dosage of the meds you were on before that [[worked]].DING!
This is your stop! It takes you another 10 minutes to hobble to the bar from the bus stop. You arrive at the bar and look for your friend.
As you walk in a man dramatically leaps out of your path.
"OH MY GOODNESS I AM SO SORRY THAT WAS SO DISRESPECTFUL I AM SO SORRY PLEASE FORGIVE ME" He stammers awkwardly.
It's as if he had never interacted with someone using a a cane before.
You spot your friend and wave.
"There you are! What took you so long?!"
You don't answer. You order a drink and catch up with your friend. You try to calculate the amount of time you will need to wait after drinking before you will be able to take ibuprofen.
You talk to your friend for a few hours and decide you need to take a cab home because you're in so much pain and don't think that you can deal with public transit and walking again.
The cab ends up being really [[expensive]].THE NEXT DAY
You wake up in tons of pain. You only had one drink last night but you are exhausted and strained from exerting yourself by going to the bar. Your body is upset with you but it was really nice to get out of the house and catch up with your friend. It's really easy to feel isolated when you're in pain all the time.
You pick up your lap top and try to open it to check your email. It's too heavy and trying to open hurts. You use your phone to check your email instead and you take some ibuprofen.
[[0oOoOoO0ooo0]]THE NEXT DAY
You aren't going to do anything today. Your body simply will not allow it. You're tired and your entire body hurts.
You spend most of the day sleeping, only getting up when you can muster up enough strength to go to the [[bathroom]].A friend of yours recommends a doctor to you. He's another general practitioner who may or may not know what fibromyalgia even is. You call to schedule an appointment. The next one available is a month and a half from now. You'll [[wait it out]].A MONTH AND A HALF LATER
You're on the bus. You were unable to get a ride this time. It will take you an hour and a half on public transit to get to the doctor. OWWWW. You fill out another mountain of paperwork, once again not quickly enough. The nurse asks you a bunch of questions while you are also trying to fill out the pile. You manage to finish before the doctor comes in.
You explain your symptoms to him and why you're there and he gives you a gown to change into so he can examine you, and leaves. Once you have changed, he comes back. The way that most doctors diagnose fibromyalgia is by pressing 18 trigger points on the body. A minimum of 11 of these trigger points need to be painful in order for you to be "officially" diagnosed in this way. The doctor pokes and prods at your body asking you if it hurts or not. By the time the examination is over you are in a lot of pain. You have 16 of the 18 trigger points, and an official fibromyalgia diagnoses now.
As difficult as it is to hear that you have a chronic illness that you will likely have for the rest of your life, it's a relief to finally have a diagnoses from a doctor. Many people, including doctors, still believe that fibromyalgoia does not actually exist. This creates a huge amount of difficulty and stigma for those trying to seek a diagnoses. For many people with fibromyalgia, it takes multiple years and countless doctors to get a correct diagnoses, if they are able to get one at [[all]]. Your doctor prescribes you a few new medications. You take the long ride home on public transit. Your lost in thought about your new diagnoses. Your skin and muscles feel like they're on fire from the [[examination]].Your new medication makes you tired and dizzy all the time but it seems like you're in a little less pain. Some days you sleep for 20 hours. You'll probably inquire with your doctor about trying a different [[medication]].You have days where you wake up feeling like your spine and legs are covered in angry [[hornets]].You have days when it feels like the pain is actually going to kill [[you]].You have days when you think you might kill yourself to escape the [[pain]]. You can't imagine having to hurt this much every single day for the rest of your life. It overwhelms and exhausts you just to think about.You have days when you wake up terrified that your friends will forget about you as you lie in bed for days and days unable to [[move]]. You have days that you worry that you've lost your worth as a human now that it is harder to make it to parties, and dance clubs, and outings. You've lost count of the days it's been since you've seen certain faces and [[places]].You have days in which you feel so terrified of your illness and the isolation it creates around you. You think about all the people who can't be bothered to remember their friend and their friend's broken [[body]].But you also have days when smiling faces arrive at your house bearing cookies and gentle, tender [[hugs]].You have days when you're broke and a friend buys you a cab so that you can go to the bar and see familiar faces who didn't [[forget]] you at all.You have days when a buddy comes over to your house to do yoga alongside you, knowing it can be difficult for you to make it to classes, and afterward you trade massages because you help them heal just as they [[help you]].You have days when someone you love treats you to lunch a couple block away from your house and is patient with you as you hobble slowly to and from and after your food is eaten, your faces touch, and even with all of the pain and isolation and fear, with your crappy apartment and heaps of debt from expensive medical exams and treatments and supplies, and your broken body, you are, in this small moment in your own little slice of paradise. Because as alone as you feel sometimes, people love you.
THE END.You have days when you get messages from people on the internet, some you've never met, some who share your illness, some who have different illnesses or disabilities, and others who are able bodied, sending warm words, saying that they [[care]].