A day through my pain.

Here goes.

This is going to be very hard for me, because I was taught that good strong little girls didn't talk about this. We don't think about our own pain because someone else has it worse...has less. We don't talk about it because we have a roof, food, good jobs, good pets, family, friends, and even games.

I've been thinking about writing this for years. Every month I think about what to say and every month I tell myself not to do it. That's it, I'm doing it.

Hello, I go by the name Aya, and I'm 24 years old now. As I am writing this it is halloween. Halloween just happens to be my favorite holiday of the year, but this year my celebration consists of  playing a Halloween event on a computer game, after taking vicodin and muscle relaxers. This isn't what I wanted, but you don't know how it feels...

I wake up in the morning either acutely aware of lots of pain, or blissfully unaware of it. I spend a few minutes letting myself either wallow but stay calm, or breathe deeply before the pain sets in. I take a look around. There is laundry all over the floor, along with litter my cats have kicked out of their box. On the dresser on the other side of the room is a pile of clothing and towels I didn't have the energy to put away. It is at this point the depression and the guilt punch me in the gut. I may be laying down but I nearly double over with the force of everything I can't do.

My cats wake up and move around from where they were laying on my feet, twisting my ankle at an odd angle and making my knee throb. As I slide them off, I look down at myself. I'm covered in a synthetic down comforter and a double layered fleece blanket even though it is making me sweat because my feet were frozen solid last night and I have a hard time sleeping without the weight. Even when I was little I would layer 3-6 blankets on top of me and turn the thermostat all the way down in order to sleep.

Breathe in, Breathe out.

Now that I'm finally awake and I've put the guilt in the back of my mind until I can deal with it better, I take note of a few things. The meds I take make my mouth dry. My mouth isn't dry like "Oh I just breathed a few too many times through my mouth", my tongue is nearly glued to the roof of my mouth and my teeth. I gently pull my tongue off and stretch my jaw which is locked almost shut at this hour of the morning. It is at this point of stretching my jaw and yawning that I remember that ever since I got braces I have dragon breath in the mornings, so I close my mouth even though the only person around is my sleeping other half.

Now comes the cataloging. It starts with a headache that I have eloquently described as being hid upside the head with a sledge hammer, which is connected to the pain in my neck making it hard for me to turn my head due to the tension. My ribs constantly feel like there is a steel band tightening around them making it harder to breathe with every breath I take. Ever since that trip to wildwaves, where I went down a whole waterslide on the back of my neck and my knees I have had extreme tension down my spine and into my shoulders. I roll my shoulders and stretch my arms and legs, taking note that my pinky is spasming wildly and that my hips pop 4 times before I relax again. After popping, the tension in my back relieves slightly, but I'm now more aware that the inside of my hip feels like it has been impaled. As I breathe and keep moving downwards, the muscles on the insides of my thighs are cramping and spasming and it's nearly blinding when I have to convince them to do something. Finally my ankle feels sprained and the balls of my feet are bruised from when I walked the other day.

Breathe in, breathe out.

It take a few times hitting the snooze button (or accidentally sleeping through the alarm) before I can start really moving. I roll onto my side and use the momentum to slowly roll myself off the bed into a kneeling position, push off, and stand up. As the bones and the muscles settle down into my standing position more things pop and ache. I consider what I have the energy for this morning.

Shower? Nope.
Make lunch? Nope.
Nice shoes? Nope.
Breakfast? Maybe, if it's poptarts.

Start walking. One foot in front of the other. I grab my work pants, of which I have one because shopping is hard and money is tight. I put on a tank top, a bra, underwear, and my pants. Thus my day has begun. I stuff something edible in my mouth, put pellets in my bunny's food bowl, pet my cat, pull on my hiking boots, and quickly whip on my sweater on the way out the door. It's a 2 block walk to the bus stop but it feels more like a cross country trek. By the time I'm there I'm having symptoms of what feels like a heart attack, but it's just a migraine that causes pain and numbness, and esophageal spasms that feel like my heart fluttering. Just like that I'm on the bus to work. The ride makes me a little nauseous, and the turns hurt my hips but overall this is probably the easiest part of my day.

Once I get to work it's another car ride to the correct building, and then I finally sit down in my chair. An office chair. Sitting in these chairs hurts my butt, pinches my sciatica, and as it sinks, makes the rest of my legs hurt. Between the sun blaring into my eyes making my headache worse, and all of the pains from this morning having not faded, I start to get tired and cranky. I paste on the award winning smile I was taught to make by my parents when I was little, the one that if I didn't paste it on I'd get a hard time, and probably a spanking for being ungrateful. Throughout the day I spend my bandwidth calculating how much I can breathe in before my ribs hurt, how far apart I can take my steps before my hips give out, which angle do I put my feet in to keep my shoulder from hurting, how can I smile without the muscles in my face cramping? It takes every ounce of self control and energy to put up the brave, confident, and undisturbed front that the people around me see when inside I'm a hurricane of pain, emotion, and exhaustion.

Let's jump to lunch time. Lunch with fibro is not easy at all. I can not have soda, as it will mess up my intestines so much I will nearly pass out in the bathroom stall. Food is hard, because it has to be enough so that I'm not hungry in 5 minutes due to having to fight through the pain, but not so much as to make me feel queasy, otherwise I will throw up. I can not eat hashbrowns, oranges, tatertots, and quite a few other foods due to their different textures. I found this out the hard way by throwing up in a grocery store trash can. My lunch is usually a sandwich and water.

Breathe in, breathe out...fast forward.

Here we are. We made it through the work day! Only had to gasp for breath twice, and I only took one dose of 6 ibuprofen today. Accomplishments? Upon reaching the front door the guilt hits me again even harder. The kitchen has dishes everywhere, my bunny has pooped all over by the front door, the clothes and food are everywhere, our house looks like a hurricane went through it. I tried to clean this past weekend but I only made it about a quarter of the way before It felt like I had been put through a taffy machine and my knees gave out. I definitely can't do anything more than feet my kittens now before I collapse on my recliner and try not to instantly fall asleep or cry with the weight of everything. I've made it, but I've failed another day. I didn't walk to the bus stop. I took an uber instead of the bus. I didn't make my lunch. I didn't cut up the radishes for my bunny. I could have held that conversation better if I hadn't been trying not to cry from pain...

Here I sit in my recliner, playing some game where my character gets to do backflips, runs through crazy enchanted lands, sword fights, dances, and does all of this without having to deal with my problems. They're not afraid of passive aggression, not in pain from breathing, not scared of talking to people. I escape into this world as a character that doesn't know what not wanting to wake up tomorrow feels like. After that I order a pizza since I can't stand, take my now 3 different medications, sometimes more, and lay down. The meds take about 30 minutes to kick in, and once they do they knock me out...cold. I don't wake up for anything easily, and if I take a muscle relaxer or a benadryl I can be out for days. When I sleep I'm used to the nightmares of people I know dying, me losing my job, everyone I know leaving me, all those fun anxiety dreams. I wake up the next morning after 10 hours of sleep (the minimum I have to get to function) more exhausted than when I went to sleep, and start another day just like the last.

This cycle continues until the pain gets too much and I get something to help for a little while from my doctor, and then I start again. This is my day to day. The pain doesn't subside, I rarely "feel better", and I don't know how to express to people how I'm feeling or what's wrong because I have to fight with so much every day... This is pretty much an average day for me.

I know this all seems super over the top, super depressing, and overall just exaggerated. But I promise you that this is how I am, and I hope that you can read this and learn a little bit more about me. So there we are. This is 8 hours of off and on typing, and probably about 8 years in the making. I've finally done it, now I hope you can accept me.